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.

Earned Another Stripe

It was the most painful date night my husband and I ever had. We both had karate belt testing this evening. He started about seven months after I did, and earned his blue belt. I earned my brown stripe. My next aim is my first brown belt, and after three levels of brown I would (hopefully) earn the chance to test for my black belt.

Not only did I do this one with half a brain, but I also did it with a gimp leg. Earlier this week I was learning a brown belt form that is particularly acrobatic, and my knee was not happy with the part where I had to spring from a crouch position into a scissor kick. It's been trying to punish me ever since.

Luckily the ongoing knee pain was secondary to the thrill of the test, knowing that once again I was doing something that would have seemed impossible to me about two years ago.

...and...THIRTY-THREE!

Yesterday I was able to mark thirty three months of living like I'd never lived before. In three more months I'll be considered a "long-term survivor."

My family members now refer to my condition as the "alleged" brain tumor.

Still gotta keep on my toes. Still gotta be thankful for the gift of each breath, and for the hope that each new day brings.

Still gotta live while I can.

(Don't we all?)

Something in politics worth blogging about here!

"A ship in harbor is safe, but that’s not why the ship is built."

- Alaskan Governor Sarah Palin, giving her remarks after being named McCain's VP pick

This was said in the context of explaining why she didn't go with the "safe and easy" way of status quo politics. But naturally, I had my cancer glasses on and appreciated the additional application to adversity in our lives and the faith that gets us through it all.

We weren't "built" here on earth to have a safe and easy ride. Not that we are supposed to go out looking for danger, but life is meant to be bumpy so that we can learn and develop our fullest potential. If we press forward with a steadfastness in Christ and a perfect brightness of hope, we can successfully navigate through this life experience.

Sorry for the long pause...I was on my honeymoon!

Actually, I'm still on my honeymoon...and have been for the past twenty years!

Look at those cute kids at the Salt Lake Temple on August 20, 1988!

And there they are again, on August 11, 2008!

And here they are a few days later, celebrating their 20th anniversary in Hawaii!

(Twenty years...ten addresses...two kids...four beagles...and one brain tumor later.)


This hug at Hanauma Bay is courtesy of my mom, who not only gave us the trip, but also came to our house and watched the kids while we were gone.

We spent our first night as classic tourists in Waikiki. Since Texas is five hours ahead of Hawaii, we were able to wake up, walk the beach, and eat breakfast before heading up to Diamond Head to watch the sunrise.

(Photography just doesn't do it justice.)

Then we were off to Laie, to immerse ourselves in the island experience at the Polynesian Cultural Center. (It was like Epcot Center for Polynesia!)


Here we are with our tour guide, "Rock":

And here I am, at a demonstration of Maori New Zealand (Aotearoa):

It's not the most flattering picture, but I like it because I'm imitating their distinctive quivering hands while dancing, which they do to represent that they are full of the life force. It was definitely blog-worthy!


After a fun day and a monster feast of seafood and fruit (no pig, thank you -- gimme Omega 3's and antioxidants) and a spectacular Horizons pageant, we spent the night on the north side of Oahu, at the beautiful Turtle Bay Resort.


We spent the morning walking the beach, and then got some toes-up time with some good books on the balcony of our room:

And then we headed back to Laie to check out the BYU-Hawaii campus and thank the bookstore manager for having my book on their shelves...


...and to spend a couple of hours inside the "Taj Mahal of the Pacific": the Laie Temple, which to us is the most peaceful of all the peaceful places in Hawaii. We headed back to Waikiki and played in the ocean. We also tried to have another toes-up moment with a book on the balcony, but this time I was sixteen floors up so it wasn't quite as relaxing. (Cancer hasn't cured my acrophobia yet!)

So we opted for some other forms of relaxation: 1) shopping and 2) good Japanese food. My husband served his mission in Tokyo, and loved being around so many Japanese people and getting reacquainted with the language.

(I figured eating rice with chopsticks made for another reassuring neuro test.)

We spent our last day checking out more sights, including Pearl Harbor and Queen Emma's Summer Palace (could not resist that one, since our daughter's name is Emma) and having the ultimate schmaltzy tourist's lunch at the Cheeseburger in Paradise restaurant. (After four days of fish and fruit, I splurged on a burger topped with a huge slab of grilled pineapple and sliced avocado.)

One eight-hour flight later, we were back home being greeted by a hand-made welcome sign from the kids. It was a long enough trip to enjoy some solitude, but short enough to get home just as we started to miss them.

A taste of paradise to celebrate a twenty-year down payment on forever...

...and...uh...

...uh...

THIRTY-TWO!!!!

(Lemme check now...is that right?)

(It is!!!)

Thirty-two months of survival!

Thirty-two months of miracles, one at a time!

One Miracle at a Time

It was amazing.

It didn't come with an asterisk.
It caused some head swelling, which didn't show up on the last MRI.
It was awesome!

It happened in Utah, at the Families Supporting Adoption National Conference. I taught three classes at the conference, and gave a small address during the general session.




I also gave a brief acceptance speech after being presented with FSA's Hall of Fame Award.
As I considered previous recipients of this award, I started hearing the old Sesame Street song about "one of these things is not like the other!"

Also, considering my steroid use following surgery and during cancer treatments, I thought it was cool to be a "hall-of-famer" with no asterisk by my name!

The conference theme was "One Miracle At a Time." It reminded me of my life, and how it has unfolded...one miracle at a time. From the miracle of each new day, to the miracle of a loving marriage and two miraculous adoptions, to the miraculous transformation of adversity into blessings, I have witnessed many miracles.

I look forward to seeing many more.

How To Endure Anything

My daughter turned three in June, which is usually amazing to people, because she looks much older. She's super-tall for her age, and she's also very articulate for a preschooler. And added upon that, her personality aged about ten more years after a recent trip to "Nana's."

Just to give you some history on the hair journey that led us to Nana's:

When Emma was a few months old we started out doing the "cocoa puffs":

And then earlier this year she graduated to "fro and headband":

Emma always looked adorable, but she was soon ready for something different in her coif. When she wore jeans and a t-shirt, people often mistook her for a very charming little boy. Store clerks were always saying, "Hey, Buddy!" Someone even mistook her for our six-year-old nephew on one occasion.

So my husband took her to see "Nana," a local hair braider/weaver in our town. The idea of sitting in the chair and letting a stranger touch her hair sent our daughter into a screaming rage. Fro and headband remained the style, and we just tried to keep her wearing skirts and pink clothes.

A few weeks ago we decided to try again. I took her into Nana's salon to see about making an appointment. Emma entered cautiously with me, remembering her previous trauma. But this time she let Nana comb out her hair as a test, so we went ahead and made an appointment for the following day.

I prepared Emma all the next day, telling her that she was going to have her hair braided, and that her hair was going to be really pretty. She appeared to be a little nervous, but when the time came she readily complied, got into the chair, and sat like a little angel for THREE HOURS while Nana sectioned off her hair into little pieces, then wove in some longer locks and braided them. It was a painstaking process, but Em did not utter one complaint, no matter how hard Nana had to tug on her hair. She did not squirm. She did not ask for a drink or a snack. She actually napped through part of the process. Nana (who has been braiding since she was a young girl herself) marveled that she had never been able to work on a three-year-old this easily before.

When Nana was finished braiding, she took sections of braids and wrapped them around a curler, then dipped them in boiling water to make little ringlet curls. I was the nervous one this time, but luckily Emma remained still and patient.

Finally the moment came to show her the end result. Beautiful, long braids with curls at the end. (For those who read Ramona the Pest as a kid will appreciate the term, "boing-boing" curls.) Emma stared into the mirror and smiled.

Knowing that Emma has been historically incapable of sitting still for five minutes, much less three hours, I found myself learning a lesson as I watched this miraculous event.

How did Emma endure three hours of sitting still and letting her hair get tugged, piece by piece, with no entertainment? Three hours is like three eternities in Three-Year-Old Land, so why wasn't there a single peep of complaint?

The answer is simple: she knew the purpose of the experience, and she was willing to endure whatever it took to achieve that end.

I know -- vanity isn't the most worthy of pursuits. But this was a (literally) cute way of illustrating the value of staying focused on the prize.

Romans 5:1-5: "Therefore being justified by faith, we have peace with God through our Lord Jesus Christ. By whom also we have access by faith into this grace wherein we stand, and rejoice in hope in the glory of God. And not only so, but we glory in tribulations also; knowing that tribulation worketh patience; And patience, experience; and experience, hope; And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us."

James 5:11:"Behold, we count them happy which endure; Ye have heard of the patience of Job, and have seen the end of the Lord; that the Lord is very pitiful, and of tender mercy."

Doctrine & Covenants 121:7-8: "My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over thy foes."

He Ain't Heavy (his stuff just is!)

I turned 41 on Friday. (Yay!)

I was happy when I turned 40 last year -- something not many 38-year-olds diagnosed with GBM get to do. So turning 41 was even better!

On top of that, I got everything I wanted this year. The birthday itself, of course. And good MRI's all year (so far--praise God)!

I also got my favorite shoes. Not new ones -- just my old favorites that had been hiding from me. They were gorgeous Italian shoes that were a rare find during a garage sale last year, but a common loss in our house. (I swear my epitaph will read, "She couldn't find her shoes.") It drove me nuts, constantly hunting for those shoes for months. For a while I was cruelly teased by the discovery of one shoe. It had separated from its mate, which seemed hopelessly lost. I even tried replacing them, but I could not find their equal in stores.

Then last week I dreamed that I found the other shoe. I woke up and looked under my bed (something I had done many times before) and FOUND IT!

My husband cleaned the house and treated me to three new outfits to go with my shoes. There is a special occasion coming up (I'll talk about it later) and now I have my Barbie clothes for that.

My kids gave me gifts and made me cards. My son's card was "To my speasl, speasl Mom." (His dad later taught him the right way to spell "special.") And my daughter carefully wrote "MOM" on hers -- the first word she's written on her own.

And my brother Jim drove in to town. He and his family are now officially Texas residents, living about twelve minutes from my house, and close to where Jim is setting up his dermatology practice. We spent my birthday emptying the moving truck, which was actually pretty neat. I considered it opening the big, huge present I'd been hoping for all year. (More family living close to me.) We followed that ceremony with lots of revelry, as the remaining non-Dallas-area members of my family also came up to celebrate Jim's arrival, my birthday, my nephew's birthday, my grandmother's birthday (lucky her -- she's turning 89) and some anniversaries.

On Saturday evening I saw the Osmonds wrap up their 50th anniversary tour, and as they sang "He Ain't Heavy, He's My Brother" I thought about how light the moment was for all of us, no matter how heavy the boxes and furniture were. As I thanked my mom and my grandma for being part of the reason for my birthday, I thanked Jim for his life-saving advice nearly three years ago, which is part of the reason I've been lucky enough to have forty-one birthdays.

The Rest

The word "rest" is on (what's left of) my mind.

Maybe it's because I get to rest from monitoring for three months.
Maybe it's because my son loves to practice the piano, and is still learning about rest values.
Maybe it's because my brother Mike and I were recently discussing our family heritage of sleep deprivation.

And maybe because I was thinking of my 2ofus4now support group and a question that someone asked about why certain factors in her situation couldn't guarantee a particular outcome.

Actually, that question can apply to everyone at some point (or points) in their lives. Sometimes circumstances are predictable (like if you put your hand on the surface of a hot stove, you will feel intense heat). Sometimes, however, we are placed in situations that are very unpredictable and difficult to navigate.

I was also thinking of a recent conversation I had with a friend, who faces overwhelming challenges and heart-wrenching decisions. Sometimes decisions are easy (like, "should I put my hand on the surface of that hot stove?") and some are not -- especially when options seem to be equally good and bad.

As I pondered these conversations, I thought about faith and prayer and righteous desires...and rest. Whenever we have a problem to solve, or a question to answer, or an uncertain future to face, these elements come into play.

We consider our righteous desires. Through study and prayer and pondering with sincere hearts we can understand what things are worthy of our petition.

We put our petition before the Lord in faith that he will hear us. We breathe life into our faith through our works, pursuing with our best efforts the paths and resources that are open to us.

The rest -- well, it's the rest.

(Kind of like how today is a gift -- the "present".)

The rest is out of our hands, and so we don't have to carry it around. It is a chance to rest "the rest" in the sure knowledge that we are loved and cared for, and that we are subject to the will of the Lord, who knows us and loves us. We won't go astray if we are sincerely tring to do our best, and put our complete trust in the Shepherd. We may rest safely in that trust, knowing that even if it is through thorny ways, we will be led to a joyful end.

"Take my yoke upon you and learn of me, for I am meek and lowly of heart, and ye shall find rest unto your souls." (Matthew 11:29)

Quarter Rest

Today's MRI was good! Things have remained stable long enough that my "live and look" plan has been extended to three-month intervals!

As long as I remain symptom-free, I am finished with MRI scans for the rest of this quarter. I don't go back until October 14! My son begged me to show him the "pictures" when I got home. He wrote me a note to tell me how happy he was that my pictures looked good. To punctuate it, he taped part of his favorite pencil to the note as my prize.

Recent clinical evidence of a functional brain is useful when I have half-brained moments (like when I went to karate class this evening without my belt). I also realized today that I completely forgot about July 12 being my "...and THIRTY-ONE!" monthly milestone!

(...brief moment of elation to mark that milestone...)

Speaking of half-brained moments, I heard a cute joke today about someone who named their pet zebra "Spot".

And another one about a guy who said he had CDO. "It's like OCD (obsessive-compulsive disorder)", he explained, "but with the letters in alphabetical order...like they should be!"

And I also listened to someone talk about the logic behind selling suitcases at the airport. "Do they really think someone is running around with his arm full of shirts, looking to buy a suitcase?"

Those gave me a chuckle as I went into the tube. It's nice to be able to smile when you're getting your picture taken!

Here I go again!

(My apologies to Whitesnake)

Here I go again on my own,

Goin' through the MRI I've always known.

Thanks to prayers I know I'll never walk alone.

And with what's on my mind,

I ain't wasting no more time!

I'm just another brain in need of rescue,

Riding solo without chemotherapy,

And I'm gonna hold on

For the rest of my days,

'Cause I know what it means

To hope the doctor says the scan looks clean!

Here I go again!

JULY 15, 2008 -- MRI # 19

Second = Best

My son's baseball team finished their season tonight with an exciting championship game...

...and took home the second place trophy.

(That's my Jake, front row, third from your right, holding his trophy high in one hand with his Gatorade in his other hand!)

This team has played together since they were four years old, and they work really well together. This season they moved into a tougher league, and they had some challenges to overcome. And despite those challenges, they managed to pull off a great season, and we have enjoyed each moment.

Despite their disappointment over not winning the championship title, they still emerged from the bullpen exuberant over a job well done. They really played their best this season, and that made it so exciting to watch. In my completely objective and unbiased opinion, they were true champions.

Best of all, I spent the season grateful time and again for the opportunity to be in the bleachers, rooting for #8 and getting a wink and a thumbs-up sign from him. Tonight was one of those moments I would never want to miss -- and I didn't!