Everything Therapy

Yes, I'm still around! I think I set a new personal record for the longest interval between blogs, and it wasn't just so that I could enjoy hearing from people who missed me. I was busy with "everything therapy".

My husband and I sang with Evening Song (http://www.eveningsong.com) for eight years, and we were invited back to join them on a trip to Utah for some very memorable performances. (By the way, the director also invited us to join them in Prague in '08, and my response was that I'm game for being ANYWHERE in '08! Me - in a body - still alive - pick a spot, any spot, and I'm there!!!)

Our family boarded the plane for Salt Lake City, and I had to learn the hard way about the new airline security restrictions regarding liquids, gels, etc. I thought I had been vigilant about putting all such items in my checked baggage, but I learned to my horror that I had overlooked my mascara, which was sitting in my purse. My MARY KAY MASCARA - THE BEST MASCARA IN THE WHOLE WORLD!!!!!!!!! It didn't occur to me that - oops - oh, yeah - it is kind of a liquidy, gel-ly kind of substance, and it couldn't go into the airplane cabin with me. My bags were already checked, and we also didn't have time to run it back to the car. I begged, "But sir, it's my MARY KAY MASCARA!!!" His reply was sympathetic but unyielding. Into the discard bin it went. My husband reassured me that he could get me some more when we returned from our trip, and I had to make do with some L'Oreal version that I picked up at the drugstore after we arrived in Utah. (Sorry, L'Oreal -- it's okay, but it's not the same.) The good news was that it provided the only bad luck moment during the whole trip, clearing the way for a series of unforgettable events.

One such event was a lunch meeting with my publisher. It was awesome! I'm officially under contract with them now, and I received the first round of suggested edits for my book, my favorite of which is the comment that they preferred my own "voice" to any quoted passages that I used. This will be a really cool process. It means everything to me to be able to see this important legacy project moving forward.

Our two choir concerts were also amazing experiences. One was in the Alpine Tabernacle in American Fork, and one was in the Assembly Hall on Temple Square in Salt Lake City (where I have longed to sing for many years). One of my favorite moments was when an Assembly Hall official opened the concert with prayer and gave thanks for our choir who had come "from the GREAT STATE of TEXAS". (I had to suppress the impulse to "Yee-HAH"!) We had many friends and family members attend our concerts, and it meant everything to me to see these dear people, to have them support our performance, and to be able to sing great stuff with a great choir. One of our many supporters was our high school choir director (who was also our clog dancing teacher and Cloggers West director), and it meant everything to us, to be reunited with the person who discovered and cultivated our talents, and who directed these activities that formed lasting friendships (including my "gaggle" of girlfriends and the romance with my dance partner who later became my husband). We had a couple of family gatherings outside of concert time, and those family relationships mean everything to me. Some of my favorite memories of my growing-up years include the family gatherings that would happen almost every weekend.

I had some fun bonding time with my son as we went for a long walk one morning while everyone else slept in. He was enamored with the mountains, and he listened to my story as I took him on a long walk up one of the foothills in Lindon, starting at my old bus stop at the bottom of the hill, to where my old house stood at the top of the hill. The hill is now paved, but it was a steep gravel road when I was a student in junior high and high school. After a long day of classes (and clogging) that steep gravel hill was a tough climb for a girl who was really into fashionably uncomfortable Candies shoes during the early eighties. As I explained to my son, I was relieved a couple of times when a nice boy pulled up to me in his parents' car and drove me up the hill. He was my dance partner at school, and I later married that nice boy. It meant everything to me to relive those early years of a budding romance, and to share more of our family's "story" with my son.

We also had some time to reunite with some friends, including two of the "gaggle". One of them is a cancer survivor, too, and she and I share a fantasy of starting a girlie rock band called the "Longflicks" (because life is just a flick of the finger, and we each want a long one). So we posed for our album cover. It meant everything to me to spend time with my friends, and especially to have some hang time with the one who walks a few steps ahead of me and gives me lots of laughs and inspiration as we travel our cancer journeys together.

On Sunday morning my husband and I bid a temporary farewell to our children, who stayed with their grandparents during the next leg of our adventure. We drove back to Salt Lake City and attended the broadcast of "Music and the Spoken Word" with the Mormon Tabernacle Choir, and we even had the opportunity to meet with the director of that choir afterward. It was an unforgettable experience, and it meant everything to me that they opened the broadcast with one of my favorite songs, "How Lovely Is Thy Dwelling Place", from Brahm's Requiem:

How lovely is thy dwelling place, O Lord of Hosts
For my soul, it longeth, yea fainteth, for the courts of the Lord
My soul and body crieth out, yea, for the Living God
How lovely is thy dwelling place, O Lord of Hosts
Blessed are they that dwell within thy house
They praise thy name evermore
How lovely is thy dwelling place

After the broadcast we went to church services with some friends, and it meant everything to be able to take part in that worship, to take the sacrament, and to feel the wonderful spirit that surrounded us. After church we headed straight for Star Valley Ranch, Wyoming, to our original honeymoon cabin. It meant everything to me, to be able to recapture one of the most magical times of my life in such a beautiful, memorable setting. I married well, and that means everything to me, too.

A couple of days later we came back to Utah, reunited with our children, and took them to Salt Lake City to see the temple grounds. The Salt Lake Temple is where our family was first "born", upon our marriage there eighteen years ago. We also toured the visitor's center, where our son marveled at the large statue of Jesus Christ, the Christus. As we approached Temple Square, we also passed by the McCune Mansion, which was the site of our wedding reception. This historic home is alleged to be haunted, according to hauntedhouses.com, and while I've never personally experienced anything that would confirm that rumor, I sure do plan to haunt it myself someday. Meanwhile, it meant everything to me, to share these special places with my children, and to see them enjoy the big statue of Jesus.

After a wonderful week we returned home to Texas, and it meant everything to me to return home, safe and sound, and find that all is still well here. "Everything" therapy paid off well: I aced my neuro test and blood tests the next day at my oncologist's office, and I feel pumped and ready to take on Round 6 of my maintenance chemotherapy on Monday.

While Others Slept

As a third-generation insomniac, I was grateful to receive several years ago, a book entitled, While Others Slept, which is the autobiography of Ellis Reynolds Shipp, who was the mother of six children and the second female to become a doctor in Utah.

She established her own practice and during her career delivered more than 5,000 children. The School of Nursing and Obstetrics, which she founded in 1879, trained five hundred women who became licensed midwives. She continued her study of medicine with graduate courses at the University of Michigan Medical School in 1893, graduating with honors. Her medical career lasted more than fifty years and she continued to teach obstetrics classes into her eighties.

Beyond her medical career, she remained an active and devoted member of the Church of Jesus Christ of Latter-day Saints, serving on the general boards of the Relief Society and the Young Women's Mutual Improvement Association. In public life, she was president of the Utah Women's Press Club and a delegate to the National Council of Women. She also wrote poetry. She died in Salt Lake City on 31 January 1939 at the age of ninety-two.

She obviously did a lot of stuff "while others slept", including writing her autobiography. Recapping her achievements makes me tired. (Well, okay, and so does blogging close to midnight in my quiet, dark home.)

For those of you who saw my "brain on steroids" post back in December may recall the time when I was taking advantage of my active post-op mind and my steroid-induced insomnia and writing up a storm "while others slept". My dad came downstairs and discovered me in my office in the wee hours of the morning, as I cranked out two articles for submission to a church magazine. One was accepted - with edits - for publication.

My other project "while others slept" was a book that I had "in me" for many years, but could never quite get it together. It had actually been stagnant for years. As I lay in my hospital bed, tearfully digesting the news about my diagnosis and prognosis, a very clear voice in my head said, "Finish your book." So I did. Pretty fast, in fact. While others slept. While my surgical incision was still raw. While I still had my brain on steroids.

I submitted it for publication at the beginning of the year, and the first publisher passed on it. But a favorite author of mine, who read my manuscript, gave me some helpful feedback and advice, as well as lots of encouragement to try again. While others slept, I made the recommended changes and sent the revised manuscript to another publisher. Their verdict was recently announced to me: a rare 100% committee consensus to proceed. I'm "pregnant" with a book that is due to be published in March. (Actually, that's a pretty poor analogy, since my "labor" is basically finished and theirs is only beginning as the publication and production process commences.)

My daytime hours are filled with doctor visits, lab tests, my children, and my clients. If I'm lucky, some laundry might also get done once in a while. And, of course, gotta squeeze in that daily exercise. (Every day that I eat, since May 5th!) It feels good to go to bed, having "earned" the night's rest after a busy day. Being busy is much better than being bored. Gotta use the good glial cells while I can, so I'm always grateful for the opportunities I have to work. Grateful that I have enough energy during this "chemo maintenance cycle # 5".

But sometimes, no matter how busy the day has been, I am still a third-generation insomniac and I am often drawn in this zombie state to my writing - be it blogging or creating a manuscript or doing some technical writing for a client or sending a long-overdue letter to a friend - while others are sleeping. I know it's not like raising six kids and getting a medical degree and establishing a medical school, but it's therapeutic and it's using something that I don't want to lose. After all, every so often I have half a mind (literally) to write!

The Rain in Spain...

I keep picturing Audrey Hepburn as Eliza Doolittle, repeating very carefully, "The rain in Spain falls mainly on the plain". And I keep thinking that this rhymes with "brain", but I couldn't come up with a clever phrase to tie the rain in Spain to my brain. (The glial cells are resting from yesterday's Scrabble game. I won by almost 100 points - another successful neuro test!)

Last Tuesday I prayed for rain to relieve the drought we are experiencing this summer. I don't know why I hadn't thought of it before, but all of a sudden I felt like I should do it. So I did. Later, as I was closing the door on our car (it was one of those days when I had access to our car), I noticed how dirty it was, and I considered taking it to the car wash. But a little voice inside said, "You prayed for rain. Why would you wash your car?" So I decided to exercise a little faith, in the hopes that it might actually rain.

Later that afternoon, during my son's football practice, the clouds gathered, lightning flashed, and we were caught in a downpour that hadn't been seen all summer. It was great! And then, in typical "wow" fashion, this prayer was answered with more rain over the past several days. It's raining this afternoon again.

I'm not having a Bruce Almighty moment. It's not like I get credit for the rain. And it's not like I automatically get everything I pray for. And it's not like praying for rain was a unique idea during this season of drought. But it was nice to be guided in what I should be praying for. And it was nice to be reminded of the importance of faith. And it was especially nice to see the outpouring of blessings that came in response to this petition.

One day this week, as I walked my son to kindergarten, he noticed a rainbow in the sky and excitedly proclaimed his discovery, jumping and pointing and shouting. Rainbows are cool. The colorful light through the rain. A reminder that the storms of our lives can help create beauty and blessings. A symbol of God's promises to his children.

I remember that a friend shared with me one of the verses from the hymn, "God Moves in a Mysterious Way", which includes the following words:

Ye fearful saints, fresh courage take;

The clouds ye so much dread

Are big with mercy, and shall break

In blessings on your head.

She reminded me that adversity, like rain, is a necessary part of life. Sometimes we think of rain like the cartoon character who has a cloud following him around. Or as Karen Carpenter used to sing, "Rainy days and Mondays always get me down..." But living in a drought helps create an appreciation for rain. Not much grows in a drought. And not much spiritual growth happens without adversity.

Of course, as useful as rain can be, too much rain can be overwhelming. I remember helping clean out homes after a major flood in the Houston area in the mid-90's, and I remember hearing my husband's stories of his relief efforts in post-Katrina New Orleans last year. Sometimes we are overwhelmed by the storms of adversity in our lives. But even these storms are followed by a rainbow. Even our worst afflictions can be consecrated for our benefit. I have been amazed by the blessings that emerged from the most difficult times of my life.

I remember being much younger and hearing the classic song from the movie, Butch Cassidy and the Sundance Kid:

Raindrops keep fallin' on my head

And just like the guy whose feet are too big for his bed

Nothin' seems to fit

Those raindrops are fallin' on my head, they keep fallin'

So I just did me some talkin' to the sun

And I said I didn't like the way he got things done

Sleepin' on the job

Those raindrops are fallin' on my head, they keep fallin'

But there's one thing I know

The blues they send to meet me won't defeat me

It won't be long till happiness steps up to greet me

Raindrops keep fallin' on my head

But that doesn't mean my eyes will soon be turnin' red

Cryin's not for me'

Cause I'm never gonna stop the rain by complainin'

Because I'm free

Nothin's worryin' me

Yeah, nothing's worrying me today. In fact (and my apologies to any lactose-intolerant readers for this super-cheesy final thought)...

I'm singing in the rain

Just singing in the rain

What a glorious feelin'

I'm happy again

I'm laughing at clouds

So dark up above

The sun's in my heart

And I'm ready for love

Let the stormy clouds chase

Everyone from the place

Come on with the rain

I've a smile on my face

I walk down the lane

With a happy refrain

Just singin',

Singin' in the rain

Anniversary Therapy

People who are happily married tend to have a lot of anniversaries. So we had one - our eighteenth - on Sunday.

We were married August 20, 1988 in the Salt Lake Temple, almost six years after our first date, five months after my husband returned from his two-year missionary service in Japan (the longest two years of my life, but well worth it), and one week after my graduation from Brigham Young University. (If I finished college before getting married, my parents promised to give us a car, so I did and they did.)

I often spend some of my Sunday time doing genealogical research, and it so happened this weekend that I discovered some roots of my family tree that tap into the royal Tudor family of England. And I thought it was kind of interesting, because despite that being unknown eighteen years ago, my wedding day still felt like a celebration befitting a princess.

The morning wedding ceremony was private and beautiful, with close family and friends in attendance. That evening, many more joined us for a wonderful reception at the historic McCune Mansion in Salt Lake City (pictured right), complete with a harpist, a buffet dinner surrounding an ice sculpture of the temple, a ring exchange ceremony, a beautiful cake adorned with fresh flowers, and dancing accompanied by a live band. Afterward, a horse-drawn carriage whisked us away, fairy-tale-style, to our "happily ever after".

We honeymooned in scenic Star Valley, Wyoming, in a private cabin generously loaned to us by a friend. And we did live happily ever after.

In the past eighteen years we have ridden the rollercoaster of life together, and there's nothing more wonderful than riding with your best friend.

We celebrated this weekend in our typical style of celebrating things with a string of several mini-events. We attended the Dallas Temple on Saturday, followed by a lunch date, and then Saturday evening we went out to dinner and came home to watch Beetlejuice. I remember the night before my wedding, staying in a hotel in Salt Lake City with my parents and my brothers, and we watched Beetlejuice on the television because I was too excited and nervous to sleep. So it was funny to watch it this weekend as a nod to that memory, and it was also funny to watch the scene where all the dead people are sitting around in the waiting room, and you can tell how some of them died. (I once blogged about a thousand years from now, when we're all gone and we sit around in the afterlife yakking it up about the details of our life and death, and this scene reminded me of that. It also reminded me that I promised to haunt my husband if I die before he does.)

On Sunday morning we had muffins for breakfast, because I remember on my wedding day, as my mom and I were running late and trying to get to the temple, she kept insisting that I eat something. The last thing I wanted at the moment was breakfast, but Mom grabbed a quick muffin in the hotel lobby and kept trying to force feed it to me so I wouldn't faint during my wedding. So I like to eat muffins for my anniversary breakfast because it's another funny memory of that day.

After church we had a family dinner featuring salmon (because at our reception we had salmon mousse) and white cake with raspberry filling (like our wedding cake). My wedding dress, a framed invitation, and the satin pillow that held our wedding rings during the ring ceremony were used as decorations. We put a television in the dining room and played our wedding video while we ate. Our son picked out some roses for us the day before, to help us celebrate "our family's birthday", and these also adorned our feast.

And, as usual, the celebration is not yet over. We have a trip scheduled to return to the honeymoon cabin in Star Valley next month. And truth be told, it seems like the past eighteen years have been an on-going celebration anyway, and it will continue that way (awwww).

After all, a temple marriage is one that is sealed "for time and all eternity", instead of "'til death do you part". That has always been important to me, but when mortality hits the radar screen it becomes all the more valuable to me, to know that cancer isn't signaling the impending end of our marriage. It'll just be a temporary separation, like it was during Jared's two-year mission in Japan (except this time I get to haunt him), and then we'll be reunited again. We will share many, many more anniversaries, long after cancer or gravity or whatever else finally claims us and sends us back from whence we came. On our eighteen thousandth anniversary I think we'll have muffins for breakfast again, and we'll ask for a replay of our wedding day on the heavenly Jumbo-tron (or whatever the angels record our lives on), we'll have another family dinner (maybe invite some of the Tudors - preferably the ones who didn't behead their spouses) and then we'll go off to haunt the honeymoon cabin again.

House Hunting

I remember going to my grandfather's funeral when I was eight years old. This was my mom's dad. He died of melanoma cancer, and outlived his six-month prognosis by seven years...succombing only after it had spread to his ...(shudder)... brain. I felt very close to him and remember this being my first experience with significant grief. I have six memories of that moment in my life:

1. Mom coming into my bedroom to tell me the news, and crying with me on the floor.
2. Mom teaching my brother and me about death and resurrection, using a glove as the person's body and her wiggling hand as the person's spirit.
3. Dressing in a blue dress, because Mom said blue was better than black for a funeral, because we were celebrating life.
4. Going to the wake and feeling overcome with grief, but not wanting to admit it, so I told everyone I was crying because I had a stomachache.
5. Riding in the limousine, and sharing caramel "bullseye" candy with my aunt.
6. Hearing a man sing, "In My Father's House Are Many Mansions" during the funeral service.

Speaking of mansions, I also remember when my grandmother died when I was 23 years old. This was my dad's mom. Her husband (my other grandfather) died before I was born, so she had been widowed for a long time. She was serving as a missionary in Tennessee when she died of heart failure in her late sixties. She had lived an extraordinary life, and one of my memories of her death was when someone at the funeral commented, "Gee, I'd love to see HER mansion!"

Six months before I was diagnosed with a brain tumor, we bought a new home. It was the fifth house we'd lived in during the ten years we had lived in Plano. It was my son's third home (he was four years old at the time). We were so excited to have finally found THE house we could stay in for a long time. It has all the rooms we wanted. It has a nice backyard. It is in a great neighborhood, and very close to a great elementary school. It has enough space for large gatherings of family and friends, fulfilling my dream of being surrounded by loved ones and making memories together and making a huge mess with all of our playing and eating and stuff, and no one caring about the mess because we all just love each other. It has a floorplan that accommodates my home office, plus growing children and retiring parents, since we are potentially part of the "sandwich" generation of couples who may find themselves caring for young children and aging parents at the same time.

Our previous house was the opposite. It was a nice house, but we outgrew it way too fast. I felt like we hadn't made the best of our housing dollar (which in Texas can usually go pretty far). We were short-sighted in our decision to buy it, and we suffered from buyer's remorse for a long time. It had a tiny backyard that was not kid-friendly. The house was too cramped to accommodate visitors, a home business, and our plans to grow our family. For three years we built a list of the things we wanted in our next home, and prepared ourselves financially so that we could maximize our equity and other assets, optimize our credit score, and take advantage of the best interest rates.

It was nice to shed that house and move into a place that matched our list. One that met our needs as well as many of our wants. Our planning and preparation paid off nicely. We decided that this new house was "IT": the last house we would buy until retirement.

Even so, there is one dream house that we drive by once in a while, just for grins. I call it a dream house, because it could not possibly exist in our reality. It is in a very exclusive neighborhood, and is worth about twenty times what we paid for our current home (which wasn't cheap). It is a huge, gorgeous house. The rear exterior looks like a Mediterranian resort, and I swear it would make an ideal film location. It is indeed a mansion. We do a "drive and drool" every so often, just to enjoy its beauty.

Enter cancer. Suddenly houses aren't that important anymore - even that dream mansion - except that I did appreciate having enough space in our current home for the parade of family and friends who have come to visit. As I pondered this, I naturally realized an important parallel.

In our Father's house are many mansions. If we are shortsighted, we might end up having to settle for a less-than-optimal dwelling place. If we plan and prepare carefully, we may find ourselves in a glorious home in the presence of God. When I consider the focus we placed on scoring the right earthly house, and the kind of preparation and resources that would be needed to obtain the "drive and drool dream mansion", I realize that we are really better off putting our energy and effort into building our eternal residence. I hope to live near the grandparents and other good people from whom I descend, because I know that they invested in beautiful heavenly mansions.

And I hope that someday our heavenly home will once again be filled with family and friends. President Ezra Taft Benson shared his goal that there be "no empty chairs" in his family circle in the next life. Likewise, I don't care whether our heavenly home has Travertine floors or a swimming pool. My list for this home is short: good location, and no empty chairs.

Krista-"L" Clear

(Sometimes people think my name is Crystal, because "Krista" sounds close enough to it, that they are almost interchangeable. In fact, one of my birthday gifts was a beautiful Swarovski crystal figurine of a girl, and I started calling it the Swarovski Krista.)

Anyway, good news on the MRI front today. I am crystal (or Krista-L) clear today. In fact, my oncologist even said that there is improvement. Other previous areas of interest have cleared up, and prior inflammation is gone. And most importantly, it was another "knee-deep" scan: NEDP = No Evidence of Disease Progression. No new tumors so far (knock wood). And my neuro test was a breeze. I didn't have to count backward today (but I did anyway). I got a new test today, which was easy: spell "world" backwards. (Close your eyes and try it without looking at the word.) I also proved once again that I am very sober and capable of walking a straight line like a supermodel on the catwalk (the only thing about me that even remotely resembles a supermodel). Which brings me to the only bad news I received: 97 days of daily exercise didn't really reflect on the scale, although I was at least able to show off the loose waistband on my pants.

Not in the death spiral yet, thank goodness. (And there was no ironic deadly car accident on the way home, either!) In fact, it was really nice to hear my doctor talk to me about how they do things during the second year of this process. I was just so darn happy to be able to talk about a second year of anything, as though it were actually realistic to consider instead of being some kind of medical oddity. My doctor smiled and said that there are some treatments that are working really well with her patients, even if the Temodar stops working (which is not my problem so far - knock wood). Speaking of Temodar, I start that up again on Monday for my five-day, high-dose "maintenance" regimen this month.

As has been the case before, the MRI process itself was very comfortable and easy to handle. I felt very calm and reassured that no matter what, everything was okay, and I swear it is because I was once again floating on prayers today. I really appreciate everyone's prayers on my behalf, which helped both the outcome and the ease of the process leading to the outcome.

Drumroll, please...

Yes, it's that time again. MRI Eve. I can't help but remember that I am nearly 8 months past diagnosis, and I once read an article that mentioned the prevalence of fatal tumor recurrences that happen within the first nine months.

I keep reminding myself that I am functioning well and I don't have any apparent signs of any new neurological problems. (100...93...86...79...72...65...58...51...44...37...30...23...16...9...2)

I keep reminding myself that EVEN IF something new is there, it might open doorways to new and better treatments. For example, immunotherapy is not an option for me right now, because they can't make a tumor vaccine from the original tumor site. It is considered "contaminated" by the chemotherapy wafer they inserted during surgery. So one good thing about a new recurrence is that it might be a source for a tumor vaccine (IF it's in an operable location and IF I have willing insurance and/or other resources to pay for experimental treatments and IF I can enroll in a study group, and so on...). There may be other treatments that are easier to qualify for, once I fall into the category of "progression after initial treatment". (NOT that I'm hoping for this!) But all is not lost, just because of a recurrence. My oncologist has reminded me that she has many tricks up her sleeve.

And finally, EVEN IF something shows up in a non-treatable and life-threatening location (shudder)...well, I am reminded of a couple verses from a popular hymn that the LDS pioneers repeated during their exodus to Utah to escape religious persecution:

Why should we mourn, or think our lot is hard?

'Tis not so; all is right.

Why should we think to earn a great reward

If we now shun the fight?

Gird up your loins, fresh courage take.

Our God will never us forsake.

And soon we'll have this tale to tell;

All is well! All is well!

***

And should we die before our journey's through,

Happy day; all is well.

We, then, are free from toil and sorrow, too.

With the just we shall dwell.

But if our lives are spared again, to see the saints their rest obtain,

Oh, how we'll make this chorus swell:

All is well! All is well!

I keep reminding myself to ignore what I read about the bleakness of glioblastoma, to quit trusting in the "arm of flesh", and to trust in the Lord instead. I know that this is out of my hands. I've done my part to be healthy, I'm using prayer and faith, and the rest is in the hands of the One who loves me and who has a great plan for me, and who watches carefully over this process. No matter what, all is well...

...Even so, it's a nervous time, waiting to hear the outcome of the MRI results. Sometimes even bad news (NOT that I want it!) is easier to handle than uncertainty (especially when someone has a lively imagination). As much as I trust in the goodness of whatever the outcome is, it's hard to be in limbo, not knowing what the battle will look like. This is a time when I really tap into the many prayers being offered on my behalf. They have kept me doing so well so far, and they really do carry me and comfort me through the anxious moments. There is great power in prayer. For those of you who pray, THANK YOU--and please send another one my way.

Milestone Therapy

Today was my son's first day of kindergarten. A day we have planned together for a long time, especially during "Camp Mama-atta-home-a" this summer. He was ready, although there was a funny side effect to all of the phonics work that we did: he now insists that his last name must have an "x" in it, because "Oakes" has an "x" sound in it. He has been spelling it correctly from memory for two years, but now he is learning enough to analyze words and how they are spelled.

Speaking of memory, I had to help him memorize a six-digit code that he is to enter on a keypad at the cafeteria, to access his prepaid school lunch account. He learned it quickly, and I was happy that we both passed that neuro test.

This night-owl child went to bed uncharacteristically early last night, so he was up uncharacteristically early for his first day of school. He (uncharacteristically) wolfed down a huge helping of scrambled eggs (his request for breakfast) and stood proudly for a picture, sporting his new school uniform and a sign that said, "Jacob's first day of kindergarten - August 9, 2006".

We walked together to school and easily found his classroom, thanks to the "meet the teacher" orientation we attended on Monday. After putting his backpack in his locker and his snack in his cubby, my son sat down at the classroom table in the spot labeled "Jacob" and began coloring a picture. His teacher gave me a little gift as I left - a plastic bag filled with a tissue, a cotton ball, and a teabag, and a little note. It expressed gratitude for being entrusted with the care of my child, and instructed me to hold the cotton ball and let its softness remind me of the gentle spirit of my child; to go home and dry my tears with the tissue, then make a cup of tea and relax. It was a thoughtful gesture, since I think more parents than children were crying as they said goodbye.

I know that the first day of kindergarten can be a proud but traumatic milestone for a mom. I had several people ask me this week how I was handling this time of our lives. It is a special, sentimental moment, just like other milestone moments can be. I missed my little guy. But truth be told, the overriding feeling today was one of gratitude and relief that I was able to be here for this milestone.

Cancer Glasses

When I was about six or seven years old I began wearing glasses for reading, having been diagnosed as far-sighted. I always wondered if it had something to do with the fact that I learned to read at a very young age, and reading had become my favorite hobby. Having glasses in a really stylish case was kind of fun, but the novelty soon wore off and my glasses went the way of my piano lessons at that age: a nice idea, but not for now. Besides, I could still read just fine.

Later, in my teens, I was diagnosed as near-sighted. I could see okay, but sometimes I would get headaches reading the blackboard at school or watching movies. The long-neglected reading glasses were replaced with a new pair of glasses for use in school and at the movies. Again, I tried it for a while, but the novelty wore off, and I went "au naturel" with my eyes again before too long.

In college I had an eye exam and was told that I was neither far-sighted nor near-sighted. I had "perfect...better than 20/20 vision", according to the eye doctor. No glasses anymore, which was good, since I had no idea where those old glasses had gone anyway. And I was happy to know that I was seeing things the right way.

Around the same time, my mom started wearing reading glasses. She had never worn glasses before, but she had just finished law school, and I guess all that extra reading had taken its toll.

My dad and my youngest brother have both worn corrective lenses since they were babies. Another brother started on lenses in college, and another is lens-free, like my husband and me. Well, or at least like I used to be.

Now I have new glasses: Cancer Glasses. They don't have rims or lenses, but they are real in the sense that they have changed the way I see everything. (Figuratively, of course. I am aware, after all, that this cancer might eventually make me go blind.)

I now see each evening as a chance to give thanks for another day of life. Especially each day of life when I could be with my family.

I see Thursday (my weekly blood draw day) as the day NOT to do upper body workouts. Veins need a break that day.

I see phytonutrients as crave-able food, and bacon as toxic waste.

I see my Temodar week (chemo taken on an empty stomach at bedtime) as "diet week", because there is no evening snacking.

I see my bike as "Lance Armstrong Therapy".

I see EVERYTHING as a neuro test.

I see my business as a fortunate circumstance that was already in place when I needed a flexible schedule where I could work from home in sickness and in health.

I see my Mary Kay makeup as a reminder of how well that company takes care of us with their employee and spouse benefits, and with their family-friendly focus. (Buy lots of their stuff!!)

I see adversity as an opportunity to draw nearer to God as I seek His help, and an opportunity to develop compassion for someone in similar circumstances. Also, an opportunity to lose my inner control freak. ("Let go and let God.")

I see my children as my reason to survive. Also, as my reminder that blessings sometimes come in unexpected ways.

I FINALLY see trivial stuff as just that -- trivial. "The most important thing to remember is that the most important thing is the most important thing." The rest is just details.

I see some really funny stuff, even in the world of cancer. If you don't know what I mean, you just haven't seen my hair. You must not get asked to stick your tongue out at your doctor every month. You must not have spent much time lying in a noisy tube, feeling like toothpaste sitting on an airport runway. Erma Bombeck was right - if you can laugh at something, you can live with it. I'm hoping that cancer is something I can live with, instead of just die from. And so I guess that's why things get so darn funny every now and then.

I see miracles and blessings every day. Once you start acknowledging them, they become impossible to miss, and you find yourself surrounded. ("Some may see a rainbow as nothing more than light; others see a promise and a sign.")

I could go on, but suffice it to say that when life becomes precious, you see things for what they are. The real treasures in life are more brilliant, and the "zircons" of life are more obviously fake. And life itself becomes more colorful, more delicious, and more worthy of gratitude.

Cancer glasses correct "near-sightedness" (or short-sightedness), making it easier to focus on the long-term, and making it easier to see things in their true light. They provide a valuable perspective.

It would be nice if the cancer itself would only last as long as my enthusiasm for my first pair of glasses. However, regardless of how long it lasts, I hope the glasses stay for good.

Things I've done that are cool and fun

So, what have I done for the past 14000+ days? I always think about that during birthday season. It's kind of a lot to try and inventory, and I don't mean to sound like I'm bragging or writing my own eulogy, but here are a few cool and fun things that I have done (in no particular order):

• I wrote three songs (one by myself; two co-written with Jared).
• One of those songs was written for the prophet Ezra Taft Benson, and I got to sing it to him before presenting him with a copy of the music (and I forgot some of the words but he hugged me anyway).
• I recently sang to Elder Richard Hinckley, son of the current prophet (and I didn't forget the words).
• I have sung Handel's Messiah at least a dozen times, and was a soloist in most of those performances.
• One of those solo performances was at the Artisan Theater in North Richland Hills.
• I sang for eight years with Evening Song (www.eveningsong.com), performing in the Meyerson Symphony Hall in Dallas, the Bass Performance Hall in Ft. Worth, Southfork Ranch, and a bunch of other places in Texas and Virginia. We have performed with LDS notables Kurt Bestor, Janice Kapp Perry, Senator Orrin Hatch, Michael Ballam, and more. We have three CD's on the market, and will soon have a fourth coming out. In September I am rejoining the group to sing at Temple Square in Utah.
• I danced on an age-division world champion clog dance team (and fell in love with my dance partner, who is now my husband).
• This year will mark the 24th anniversary of our first date.
• I have been on television twice: once waving outside the Today Show window, and fleeting shot during a studio audience pan on the Rush Limbaugh Television Show (also got to shake Rush's hand and get his autograph after the taping). Both TV appearances happened during a trip to Manhattan in 1995. (No wonder you thought I looked familiar, right?)
• I have been a caller on two radio talk shows: the Rush Limbaugh show and a local talk radio show.
• I was a radio disc-jockey in high school. (I mentioned this in an earlier post -- we had a school radio station that played top-40 hits.)
• I finally met my pre-teen heartthrob, Shaun Cassidy, touched his jacket, and got his autograph at the stage entrance where he performed in Blood Brothers with David Cassidy.
• I went to church with Donny Osmond (my other pre-teen heartthrob) one Sunday. Actually, he was visiting my congregation because some of his family members were there, so I just kind of saw him across the room.
• I have been able to correspond with and visit with Ardeth Greene Kapp, one of my favorite authors.
• I received two proposals of marriage, and I definitely said "yes" to the right person.
• I knew someone who played Christine in Phantom of the Opera, and I got to see all the cool backstage stuff that goes on there.
• I graduated from high school and started college at Brigham Young University before my seventeenth birthday. (I skipped the first grade.)
• I was three weeks older than the youngest person in my BYU graduating class. (It was the first time I wasn't the youngest in my class.)
• Being young paid off: I climbed a few corporate ladders (and swung from a few trees) to become a company president (and later quit being a company president) before I was thirty-five.
• I considered it a promotion to quit and become a freelance consultant so that I could spend more time as a mom.
• I won a silver medal - for essay writing - in our state academic decathlon when I was a senior in high school.
• Learning to write paid off: I have been published in two different medical device industry publications: Medical Device Executive magazine, and the Regulatory Affairs Professionals Society's Focus magazine. A lot of my consulting work involves technical writing. I have another blurb that will be published in an upcoming church magazine, and there are other writing projects in the hopper. And, of course, this blog is very therapeutic to me.
• I have lobbied on Capitol Hill on behalf of RESOLVE (a national infertility organization) on the topics of insurance coverage and adoption tax credits. As a reward for my efforts, a congressional aide took me on a VIP tour of the Capitol.
• I have had the pleasure of making friends around the world through my "2ofus4now" infertility support network. Even adversity pays off.
• I have added three members to my family without giving birth (married one husband and adopted two children).
• I have worn out three paperback copies of Gone With the Wind.
• I have read the Bible cover-to-cover, and The Book of Mormon too many times to count. (I treat those copies more gently.)
• I have driven a quarter-million miles in my lifetime, but have never pumped gas.
• I had someone knock me unconscious while someone else cut a hole in my skull and removed part of my brain. Two days later I was talking with clients, with full recall of the projects I was working on with them. Thirteen days later I was leading the choir Christmas program at church.
• I have survived surgery, chemotherapy, radiation, drug reactions, steroid weight gain, nervous moments in the MRI tube, and that awful moment of realization that I was under assault by a silent, deadly invader known as cancer.
• I have witnessed miracles and I know first-hand the power of faith, hope, charity, and prayer.

These are just a few highlights off the top of my head. I've done more than that to fill up 14000 days.

None of us knows how many days we get. If you're reading this, you have today. We can all make a list of highlights from the days we have had so far. And today is an opportunity to not only reflect with gratitude the bounty of life that we have already received, but also to build upon it and add another highlighting experience to our list.

Scrabble Therapy

Today was my grandmother's birthday. I won't reveal her age, but I will say that I descend from trees. My maternal lineage is comprised of women who easily and gracefully outlived their men, visiting hospitals only to see patients or give birth. However, there must have been a significant dilution of the gene pool, because I never did give birth and I spent my time in the hospital having a malignant brain tumor removed at age 38 (my mother's age when she started law school).

My grandmother, mother, and I also represent three generations of Scrabble fanatics. We like to play together any chance we get, and we are friendly but fierce in our quest for a seven-letter word that uses a "Q", "Z", "J", or "X" and fits nicely on the triple-word space. We each tap our fingernails on the table as we study our letters; we never remember the agreed-upon protocol for choosing who goes first (the one who draws closest to "A" or the highest point value letter); we each groan when the letter bag is emptied, and we have incredible vocabularies. (How many of you know that "wadi" is a word? It's defined as: 1. a valley, gully, or streambed in northern Africa and southwest Asia that remains dry except during the rainy season; 2. a stream that flows through such a channel; or 3. an oasis. Mostly, though, it fits nicely in weird spaces to yield maximum point value.)

Mom and I decided to go to Arizona and visit my grandmother this past weekend to play Scrabble with her as a way of continuing my birthday celebration and beginning her birthday celebration. It was a blast! We all knew the value of making hay while the sun shines - or in other words, playing Scrabble while there are enough glial cells left in the brain - so we jumped at the opportunity to continue this long-standing ritual while we are all still here and able.

Scrabble is reassuringly therapeutic, because it is a great neuro test. Organizing letters into words, remembering one's vocabulary, and quickly calculating scores requires a certain level of neurological capacity, which I was happy to confirm. I can't remember how many games we played, or how many I won, but we played many games and I won at least a few of them. My goal was to score higher than my weight during each game, and I was happy (in more ways than one) to be able to accomplish that goal each time we played.

And of course, in my habit of drawing analogies and lessons from everything around me, I found that there is much to be learned (besides spelling and vocabulary) from Scrabble. The biggest lesson I learned from Scrabble is about making the best out of the luck of the draw.

It's not uncommon during play to bemoan the random letters that we get to work with. Sometimes we are plagued with all vowels or all consonants, or we don't get enough high point value letters. Sometimes we get the "Q" without ever getting a "U". It can be brutal. Sometimes we get the "J" at the very end, when the board is full and someone else is going to use up their letters and end the game and leave us with an eight-point penalty.

Sometimes we feel limited by the way that the board is filling up (or not filling up). The ideal game is one where we are spread all over the board, so we have good access to the double/triple value squares. It's also ideal to have lots of root words placed in convenient locations, giving us opportunities to expand by adding an "S" or some other consonant that enables us to make two words instead of one. When the board is too limiting, it becomes a challenge, even when the letters can form a great word.

Sometimes we feel victimized by others. "You took my word!" was a common cry, often with facetious threats of hand slapping, whenever someone played a word in a spot that was in the designs of the next player. The punishment is usually a painfully long wait for the next player to come up with an alternative word.

All of these forces combine to dictate whether we have a "good" game or a "bad" game, and we are at the mercy of these elements, which determine whether we will win. At least I thought so, until I started playing Scrabble on the computer a few years ago.

When I played against "Maven" - or whatever the computer's name is - I noticed that none of these factors affected their play. The computer received random letters, just like I did. The computer was at the mercy of my plays, just as I was at the mercy of its plays. And yet the computer would always beat me. Why? Because it could play a winning game, regardless of the circumstances. The computer was able to identify words that could fit in any situation, using any combination of letters. It knew how to best leverage even the low point letters for maximum value. It had a vocabulary that goes far beyond mine. I was amazed at what it could do with stupid letters and limited space.

Of course, life is like Scrabble in this way. You don't have control over the letters that you get to play with. You don't have control over what other people do, and sometimes their actions affect your plans. Everyone who plays has these circumstances, so it's not the circumstances that determine success or failure. In fact, one of the games I lost was one where I started the game with a 50-point word. I had great letters but I still lost because someone who had all low-point letters was still able to make a 60-point word ("toileting" - which used up all her letters for a 50-point bonus).

The ones who win consistently are the ones who are knowledgeable and open to all of the possibilities available. They know how to leverage what they have. They know how to be flexible when the unexpected happens. They don't sink into an all-vowel pity party and give up on the game.

Those who succeed in life have the same attributes. They are knowledgeable and open to the possibilities before them. They know how to leverage what they have. They know how to be flexible when the unexpected happens. They don't have pity parties, and they never give up.

Death in the Family

Nemo the betta fish finally died. As I mentioned in a previous post, he lived much longer than average for a betta fish, despite the odds being against him.

My son previously lost a goldfish after a couple of weeks of ownership, and he still does the lip quiver and tears when "Shark" the goldfish is mentioned. That was our first experience teaching Jacob about death, and now the subject has come up again with his beloved Nemo. Jacob is taking it a little better this time, because he has a better understanding of how this works: we all have a time to be born and receive a body, and we all have a time to die and return to our Heavenly Father. It's all part of a plan. Even so, Jacob is sad, and we know that when someone dies (even a little someone with gills), we feel sad because we miss them. But we have hope that all is well for them, and there is the possibility of a joyful reunion someday.

The grief over losing a fish is not the same as the grief over losing a human member of the family. The latter carries a much heavier weight. But without trivializing it, the basic concept is the same: it's part of a plan, it happens to all of us, it is worthy of grief because we value life and love, and there is ultimate hope for better things as the plan comes to its full unfolding.

I got a copy of a beautiful poem from a dear friend. I don't exactly hear Nemo the fish blub-blubbing these words, but it's so awesome that I have to share:

Death is Nothing At All

by Henry Scott Holland

I have only slipped away into the next room.

I am I, and you are you.

Whatever we were to each other, that we are still.

Call me by the old familiar name.

Speak of me in the easy way which you always used.

Put no difference into your tone.

Wear no forced air of solemnity or sorrow.

Laugh as we always laughed,

At the little jokes that we enjoyed together.

Play, smile, think of me, pray for me.

Let my name be ever the household word that it always was.

Let it be spoken without an effort,

Without the ghost of a shadow upon it.

Life means all that it ever meant.

It is the same as it ever was.

There is absolute and unbroken continuity.

What is this death but a negligible accident?

Why should I be out of mind because I am out of sight?

I am but waiting for you for an interval,

Somewhere very near, just around the corner.

All is well.

Birthday Therapy

Well, you know, one basic way to stay alive is to keep having more birthdays. So I had one yesterday. It's a fun survival strategy.

Actually, we did so much celebrating over the weekend, you'd think I'd have advanced two years instead of one. But I'm "only" 39. If you're a lot older, you might think I'm "just a baby". If you are a lot younger, you might think I'm middle-aged (I WISH!!). If you're my age, you might be amazed at how we got here so fast and so easily. If you have cancer like me, you may just want have as many birthdays as possible, so age is just a number. When Mary Kay Ash died (founder of Mary Kay Cosmetics - the best company my husband has ever worked for, so buy lots of their stuff!!!), none of the obituary reports contained her age, because she never let anyone know it. It was just a number, and what mattered more was all the good that she did with the time she was allotted.

The big 4-0 is next year, and while some people are traumatized by "milestone" birthdays, turning forty would mean that I had beaten my prognosis and then some. So I am eager for that milestone birthday. My dad gave me a hug and wished me happy birthday and said, "May you stay 39 the rest of your life," but I laughed and said there was an awful way for that wish to literally come true, so I'd rather let those numbers keep (s..l..o..w..l..y...) passing by! Someone at my church is turning 89 this week, and I am SO jealous!!!

We celebrated with 39 hours of festivities over the weekend, preceded by a gorgeous bouquet of roses from a dear friend. Our festivities started late Friday afternoon with the adoption of Chip, a 3-year-old beagle with an adorable personality. He is a wonderful little brother for our 14-year-old dog Buster (who is also outliving his prognosis). Together they remind me of the power of one's "inner beagle". After we brought Chip home and introduced him to his new surroundings, we headed off for dinner. My husband, Jared, found a restaurant nearby that does family-friendly karaoke every Friday night, and we had a really fun party there!

On Saturday morning Jared and I spent some time at the temple, then hit some garage sales (garage sale-ing is about as big as high school football here in North Texas), and returned home in time to go with my brother and my mom to the local antique mall (to look for 39-year-old stuff). We shopped and lunched at my favorite lunch spot (I crave Potbelly's "skinny" turkey sandwich like a pregnant woman: on wheat, no cheese, just a little mayo, lettuce, and tomato), and then we headed back home to watch my favorite movie of all time: Gone With the Wind (released in 19...39). After all, "Tomorrow is another day!" (Or so we all hope!!!) Later that evening we had a family party at my favorite steak place, and then I had to scramble to get a workout in before going to bed. (I still have a policy of exercising on the days when I eat.)

We attended church on Sunday, where my son sang with the other Primary children, and he did a charming job. We had a nice dinner at home courtesy of Chef Jared, with lots of family around, and then it was time for birthday cake and a big pile of gifts.

Of course, this was all pre-birthday priming. Yesterday morning I awakened to breakfast in bed, adorned with a rose in a leaded crystal vase, and birthday cards (including a cute one where my son hand-scrawled, "I super love you Mom love Jacob Oakes".)

We then had another beagle miracle moment. We discovered that Chip had "chipped" his way through our fence during the night, and had vanished. Our initial search that morning was in vain. My son and I said a little prayer for Chip's safe return, and I had a feeling of reassurance that it would happen. And sure enough, it wasn't long afterward that we got a phone call from someone whose daughter had found Chip far across town and near a very busy intersection. After some effort they were able to trace him to us via his rabies tag number, and from their account of the morning, this was all happening while my son was saying his little prayer.

My birthday topped off with a family lunch date (Potbelly's again) and dinner at a grown-up dinner & games place (where I considered every game a good neuro test), and then we came home to lots of voice mail and email greetings.

I think if I count up all the activities, gifts, beagle miracles, and greetings, it adds up to 39 steps to turning 39. Not Hitchcock's 39 Steps, but a fun and very non-scary string of celebrations as the odometer of life clicks off another number. Each day is a gift and a miracle in so many ways, and I have been blessed to receive over fourteen thousand of them. And I got another one today!

Midpoint

July 12, 2006: exactly seven months ago, on December 12, 2005, I had brain surgery and learned that I had cancer. As Lance Armstrong puts it, it was the day I "started living".

Factoids:

• I have taken a total of 13,080 milligrams of Temodar chemotherapy, with much more to go.
• It made me throw up once.
• My "mange" is growing back -- hooray -- but my roots are definitely growing faster.
• I have had 21 blood tests since January. I have another one tomorrow. (My veins seem to know when it's Thursday, and they start perking up.)
• Only one blood test showed low white blood cell and neutrophil counts.
• No blood tests have shown decreased red blood cells or platelets so far (knock wood).
• My surgical scar looks great (if you can even see it), but my head is still really tender and my skull feels really bumpy where I was carved open. I still avoid sleeping on my right side as much as possible.
• I still have jaw discomfort from the surgical incision (I rarely chew gum and I dread eating anything tall.)
• I can count backward from 100 by sevens REALLY fast (100, 93, 86, 79, 72, 65, 58, 51, 44, 37, 30, 23, 16, 9, and 2: it took longer to type it than to say it...)
• I have a 4.0 GPA on my monthly neuro tests. Maybe higher, since they usually tell me I got an "A+"
• I can sight-read music better than I did before surgery, but my reading comprehension is (slightly) worse.
• I have taken three different anti-seizure medications: Trileptal, Dilantin, and Keppra.
• I have had 2 C-T scans and 8 MRI scans since last November. My next MRI scan is scheduled for August 10.
• I have said the words "avocado", "tree", and "no if's, and's, or but's" in my neuro-oncologist's office about a half-dozen times each.
• I have stuck out my tongue at some of the best doctors around -- and at their request.
• I have forgotten where I put my keys, shoes, wedding ring, and watch more times in the past seven months than I had in the previous 38 years of my life.
• I can still sing most of a one-hour Handel's Messiah performance and anything I ever recorded with Evening Song choir -- from memory -- and I can usually recite most of the opening paragraph of Gone With the Wind ("Scarlett O'Hara wasn't beautiful, but men seldom realized it when caught by her charms as the Tarleton twins were. In her face were too sharply blended the delicate features of her mother, a Coast aristocrat of French descent, and the heavy ones of her florid Irish father...") as well as the FDA's definition of a medical device complaint ("any written, electronic, or oral communication that alleges deficiencies related to the identity, quality, durability, reliability, safety, effectiveness, or performance of a device after it is released for distribution"). I can remember some phone numbers that I rarely call and/or haven't called in years. I also remember the address of the house I lived in when I was five years old (98 Stonegate Road, Buffalo Grove, Illinois) and the three "test words" from my last neuro exam ("tree, monkey, avocado"). But my short-term memory is sometimes frustratingly flawed. ("Dangit - did I take my medication today?")
• I can walk a straight line on my toes or heels, even with mules on.
• I have submitted four magazine articles for publication. One has been accepted (with modification).
• For at least three months I went without cooking a single meal, but I ate better than ever.
• I have had all four of my bathrooms professionally cleaned (for free) at least four times each.
• (Too many acts of service to number)
• I have had more than a dozen out-of-town family members and/or friends come to visit me in the past seven months.
• I have sung five different solo or duet performances this year.
• I have clog danced to "Duelling Banjos" with my husband more than a dozen times this year.
• I haven't missed a day of exercise in 68 days. My previous streak lasted three years, and I am determined to live long enough to beat it.
• This year I have watched exactly zero episodes of "American Idol" - my once-favorite show.
• I have purchased more than a dozen books about cancer.
• I have read less than one.
• I have raised nearly $1000 for the American Cancer Society.
• I have spent about $150 on Lance Armstrong "Livestrong" merchandise.
• I received three free copies of Lance Armstrong's books: one from a cousin, and two from the cancer center.

Today is considered my "midpoint" day, because the average prognosis for this cancer is 12-14 months. It comes from the Temodar clinical study, which showed an average lifespan of 12 months for radiation-only patients vs. 14 months for radiation-and-Temodar patients.

It is a time of reflecting back on seven months' evolution from "shock and awe" to feisty fighter. Seven months ago I had no idea what chemotherapy and radiation would be like; now I feel like a seasoned veteran. I am doing a lot better than I expected at this stage. My treatment has been amazingly tolerable. I am aware that it wasn't so very long ago that the prognosis for this type of cancer was half of what it is today. Technology and prayer have easily carried me this far with no end in sight (so far - knock wood).

This is also a time to realize that -- oops -- I still haven't done everything I wanted to do while time is a-tickin'. I've done some great stuff, and I have found so much more meaning in every day that passes. I give thanks for every day of my life, and I am blessed to realize how precious life is. But I am anxious to get some things finished and tied up, especially since I find that the more prepared I am for something, the less likely it will happen. Even so, I try not to be too concerned that I have eaten up half of that 14 month timeline. As I said in a previous blog, I can think of myself as being halfway through "the rest of my life", or I can think of myself as being halfway toward beating my prognosis.

And finally, I must report that these past seven months have taught and given me much more than I have time or space to list. Suffice it to say what a friend (and fellow cancer survivor) said to me shortly after my diagnosis: "Cancer gives more than it takes."

The Better Idea

A couple of months ago my son lost his little "CTR" ring (CTR = Choose The Right). It's a ring that he got from his Primary class teacher for his birthday, and it is a nice reminder (a la WWJD bracelet) to make the right choices. Of course, for this five-year-old child, it started out as a reminder of - "Cool, I have something to play with on my hand!"

It was no surprise, then, when he lost his ring somewhere upstairs in our house, probably in his bedroom or playroom. We looked for a while, and then I decided this was an opportunity to teach him to pray when he is in need. So I told him about my experience (recorded in an earlier blog) about when I lost my wedding ring and found it after praying for help. Together he and I said a little prayer about how he wanted to find his ring so that he could wear it and remember to choose the right. And then we set out again to look for it. As we continued to search in vain, I kept saying a silent prayer in my heart to please answer this little boy's prayer, so that he will remember that he can always turn to prayer when he needed help. What happened instead, though, is a thought came to mind of another teaching opportunity: the "better idea". After all, how else can you explain to a child about prayers that don't seem to be answered? And besides, it seemed like an important concept for him to understand, just in case his prayers of "please help Mommy get better" don't quite turn out as hoped.

I sat my son down and explained that Heavenly Father always hears and answers our prayers. Always. And he always loves us and wants us to be happy. Always. Sometimes when we pray for something, we get exactly what we pray for. Sometimes when we pray for something, we have to wait a while until we get it. And then sometimes...Heavenly Father has a better idea. He knows how to bless us and help us even better than we know, and so we can trust in the better idea, even when things turn out differently than we wanted.

There have been some heartbreaking situations among our family and friends lately, including devastating miscarriages and stillbirths, and another cancer diagnosis. These are times when prayers have been heard and answered, but in ways that we didn't want or understand. These are times to trust in the better idea. We never know what's around the corner. We never know what opportunities will rise out of the ashes of our disappointment. We never know how our experiences will shape us and lead us toward an unknown destiny. All I know is that the overall plan is one designed for our happiness and for the realization of our ultimate potential. There is a grand plan, and I know that if we were able to see things with a higher perspective, we would understand why even our most devastating moments are still times to "doubt not, fear not".

Losing a child (born or unborn) doesn't seem like a "better" idea than having a live, healthy child. Being diagnosed with a life-threatening illness doesn't seem like a "better" idea than getting a clean bill of health. Taken individually, these incidents are heartbreakingly worse than the alternatives that were prayed for, and they are worthy of sorrow and grief. However, the grand plan is the better idea, and it is a source of trust and hope in the midst of affliction.

My son did ultimately find his CTR ring. It happened differently than we expected, and it took longer than we expected, but he ultimately got what he needed, and he learned some important things along the way. Hopefully each time he notices the ring on his hand he will not only remember that he has a cool thing to play with, and that he will not only remember to Choose The Right, but that he will also remember about "the better idea."

Maybe Tonight, Maybe Tomorrow

Maybe Tonight, Maybe Tomorrow, a song by Austin modern rock group, Wideawake, is now available on iTunes, with 100 percent of the proceeds going to the Lance Armstrong Foundation. Inspired by a friend's cancer diagnosis, Wideawake lead singer Scott Leger wrote the track to honor cancer survivors (woo hoo - like me!) across the world. The track debuted May 19 at the LIVESTRONG Gala. Leger says the song "is dedicated to [his] friend and the millions of people affected by cancer. Those who we've lost and those who survive, fight, volunteer, support, research, raise awareness, give and inspire."

I downloaded the song from iTunes and did my best to capture the lyrics, because they are awesome:

I heard the news today
It came out of nowhere
Wish I could run away
But where would I go?

Is this my destiny,
Something so unfair?
What will become of me?
God only knows.

And they say the road to heaven,
It might lead us back through hell…

Maybe tonight, maybe tomorrow
We will win this fight
And bury this sorrow
We’re so alive, still holding on;
Not ready to die,
So we live strong.

My pride is left for dead
As my world gets shaken.
Thoughts inside my head, so hard to control.
I’m staring down the unknown;
One thing for certain:
That it may break my body,
But never break my soul.

They say the road to heaven,
It might lead us back through hell.
So we’re holding on for more than stories to tell.

Maybe tonight, maybe tomorrow
We will win this fight
And bury this sorrow.
We’re so alive, still holding on;
Not ready to die,
So we live strong.

We will live strong...

Despair and Die

Several weeks ago we dragged out our DVD copy of The Chronicles of Narnia: the Lion, the Witch, and the Wardrobe and watched it with our son. It is well-known for its Christian themes, particularly with Aslan the lion, who sacrifices his life to meet the justice demands of the White Witch, and to save mankind. Later his life is restored. One of the most memorable lines from the movie happens when the White Witch is about to slay Aslan. She raises her dagger and says, "Despair...and DIE!"

Now, since everyone who lives will eventually die, we know that death is not automatically preceded by despair. Even very happy and positive people get tapped by the reaper at some point. Death is part of the overall plan. However, there are different biological responses to hopefulness and despair, which may play a role in the management of serious illness.

Studies have shown that humor, hopefulness, creativity, and other positive and constructive approaches tend to correlate with better immune system functioning, better self-care behaviors, and optimized outcomes. By contrast, despair tends to correlate with depressed immune system functioning, poor self-care behaviors, and poor outcomes.

Despair is more than just the sadness, stress, and grief of dealing with a serious medical condition. Those feelings come and go like the tides of the sea. But within a framework of faith (okay, and maybe with a little chocolate therapy -- we just had a chocolate-themed family party for my daughter's first birthday), those feelings can be managed in constructive ways. Despair, on the other hand, is a lack of faith. A lack of hope. A lack of anything to help stay afloat. Despair will sink a person. Despair...and die.

Have faith and hope...and live. Well, actually, die anyway...someday/eventually...like we all will. But live more and live better.

Baby, I can drive your car

Assuming that my bouts of illness in recent past were not seizure-related, I am legal to drive again as of June 10. Hooray - a milestone to celebrate! I just have to stay seizure-free.

Of course, the irony is that I no longer have my car! Earlier this year we traded two cars for one seven-passenger SUV, because we only had one driver in the family, and this way we could fit ourselves, the kids, and friends all together into one vehicle. So I'm still grounded during the weekdays when my husband takes the car to work, but it's nice to know that I'm once again street legal, if/when I can manage to get a car into my possession.

I have been spotted driving on those lucky occasions, and it adds fuel to the ever-spreading rumors that I am "done" (as in cured, not dead). Announcements of my recent clear MRI, combined with new demonstrations of independence (taking care of my own kids, cooking my own meals, driving, etc.) have led some of my friends to believe that this is now behind me, like a toenail infection that finally cleared up or something. My theory is that there are so many hopeful, faithful people who have been praying in earnest on my behalf, and so there is a widespread expectation and hope that I WILL be cured. So lots of people are just hearing news that fits well with their good hopes for me. And that's nice, even though I am not out of the woods yet. I'm still in the battle of my lifetime. I still need all those prayers!!!

I also hear a lot of "you look great", which could mean anything from "wow - you're not as bald as I thought you'd be", or "you're not schlepping around in your jammies like the last time I saw you", to "you actually look great, you hottie" or maybe anything in that wide spectrum in-between! It's just nice to know that I still look human, despite surgery, radiation, chemo, sleep deprivation, five months of exercise restrictions, and steroids! (Ba-ba-ba-bald Ba-ba-ba-lloon!)

By the way, being street legal means that I have been "stable" for six months on seizure treatment. I'm actually six months from my surgery date. I had brain surgery six months ago, on December 12. It seems like it was so recent, but I guess time flies when you're having fun. The creepy thing is that it was also when I got my cancer diagnosis -- the worst of the worst, with a 12-14 month average prognosis. It occurred to me that I have already spent about half of that time, which is an unpleasant thought, but then I realized that I could also look at it another way: I am halfway toward beating my prognosis.

Beep beep'm beep beep -- yeah!

Slumber Party Therapy

Yes, I'm feeling better than I did during my last post (many have been asking - it's nice to know how much people care).

I'm doing well because I have a diverse treatment regimen. I have my monthly 5-day dose of Temodar chemotherapy (my latest one started yesterday). I take medication to control seizures, and I take vitamins. I try to eat lots of fruits and veggies, drink lots of water, and I exercise EVERY day. (Still going since May 5!!!) My favorite workout is on a bicycle, because it's a good neuro test, I feel like Lance Armstrong, and we added a child's tandem attachment so our son can pedal with me. My husband puts our daughter in a trailer behind his bike, and off we go for a family ride most evenings!

In April I had "gaggle therapy", when my high school friends came to town for a visit. It was awesome! And this past weekend I enjoyed "slumber party therapy". My bestest friend from sixth grade came to visit me from Wisconsin. We used to be in school together in the Chicago area, but tearfully separated when my family moved to Utah during the summer before seventh grade. We remained pen pals and met up again at around age sixteen (that's the photo where I'm sporting my cool 80's headband), but we completely fell out of touch around the time we each got married. So it was a joyous reunion when we recently found each other again after so many years, and it was especially joyous to be able to visit in person. (The other picture is the two of us standing outside Southfork Ranch last Friday.)

I call this visit "slumber party therapy", because it was like a typical slumber party: lots of talking and very little slumbering. My husband joked about how he should have come out into the living room to tell us to keep it down, since that's what dads usually do during slumber parties. As a third-generation insomniac, a former early morning seminary teacher, and the mother of a baby girl who used to have her days and nights mixed up, I'm pretty used to sleep deprivation. But this was such a fun reason for being tired! We laughed and cried and gabbed about everything from old times to current challenges and the faith that carries us through it all. Before we knew it, hours and hours would slip away so fast. Just as it was with my high school friends, it was as though the gap of space and time had completely disappeared, and we just picked up our friendship where we left off. It was good therapy for the mind, body, and soul to add more love and laughter to our lives.

Surprise!

I woke up this morning, pleasantly surprised to be awake!

Last night was a very rough night. It seemed as though I was having the worst seizures ever, at least as far as the sick feeling goes. There was no accompanying deja-vu feeling or funny smell, as was always the case with past seizures, so I'm not sure what exactly this was. But I had a series of waves of feeling really sick, as though I would lose consciousness. I considered going to the emergency room, but since my original ER experience last November, I have little faith in the competence of the care I would receive there. Back then, the ER doctor insisted that I was not having seizures, and because my C-T scan was clear, "it's not like you have a brain tumor or anything..." Had it not been for my brother (a dermatology resident) who could recognize a textbook seizure, and who insisted that I needed to press for an EEG, I'd be dead by now. Because within a couple of days I was seeing a neurologist, who ordered an EEG and MRI, and voila - seizures caused by a deadly, aggressive tumor. Left untreated, glioblastoma multiforme can kill in a matter of months. So anyway, I'm not likely to revisit that emergency room ever again.

For some reason last night, it got to the point where I wondered if this was IT for me. It's interesting, the thoughts that go through your mind when you think death is imminent. I remembered having scolded Jacob that day, and wished I hadn't. I thought about the things I still wanted to finish. I wondered if Jared would know my preferences for the funeral details. I was really glad that I said "I love you" lots of times to my family. And then, there was a sense of, "hey - this isn't such a big deal." That was an interesting reaction to the situation. I knew that even if this WERE it, there was much to look forward to after this life is over. That was a comforting feeling. However, I still reached for my inner beagle and refused to go anywhere. I wasn't ready to go. I want to live and be with my family. So I got feisty and told myself that I wasn't going anywhere - hopefully it was just the healing process making me feel lousy right now. (Remember Lance Armstrong: "The ironic thing was, the worse I felt, the better I got.") And so when I woke up this morning I was very happy to find myself alive and well.

Throughout the evening, as I pondered what might have happened, I remembered that some of my friends thought I was done and cured, because the latest MRI was clear. And I wondered if maybe some of those friends figured their prayers had been answered, and so maybe fewer prayers were going out. (Each one really counts!!!) As I was told by a dear friend and cancer survivor, you're never "done" with cancer until you're dead. Until then, it's a cycle of treating the tumor, hoping it works, and then checking and waiting for the next tumor to pop up. Remission periods are great, and I guess the longer they last between recurrences, the better the prognosis. So anyway, I'm good for now, but I'm unfortunately (or fortunately) not done. There will be another MRI at the end of July, and hopefully it will be clear once again. There will continue to be chemo each month and whatever else needs to be done. I'm good for now because of the power of prayer, and I hope that those prayers will continue on my behalf, so that I can continue to benefit from them. Got a (hopefully) long journey ahead, because - surprise! - I woke up this morning!

Buster, Nemo, and Me

Our home already has two examples of great physical endurance, and I hope to become the third.

First of all, we have our beagle, Buster. On June 11 he will celebrate his fourteenth birthday. He was our first "furbaby", acquired as soon as he was weaned, as a birthday gift to me from my husband. Beagles are known for their tenacity, and I have blogged before about my "inner beagle" as a symbol of endurance. Beagles are also known for their merry faces and dispositions, and for their rich, distinctive voices (more attributes worth trying to emulate).

The average lifespan of a beagle is 11-15 years, so 14-year-old Buster is technically an old man. It's amazing that he has made it this far, because he is not exactly in peak physical condition. He is fat and has had a worsening heart condition for years. He has had a couple of surgeries to remove tumors. He has chronic problems with his teeth, and often has to have several removed when he has his regular checkups. He has allergies, he's going deaf, and he has joint problems. All combined, one would expect him to be hugging the early side of the bell curve, but instead he remains a vigorous and cheerful companion living on borrowed time.

And then we have Nemo the betta fish. Nemo was a Christmas gift to our son in December 2004. We bought him at a kiosk at the mall, where they sold betta fish in cool glass block "fishbowls". We were told that this fish would be easy to maintain, which was a good attribute for a creature placed under the care of a three-year-old boy. They told us to feed him/her/it a couple of tiny pellets a day (or whenever - if we miss a few days it won't matter), and then when the water gets cloudy (maybe once a month), just empty out half the bowl and refill with spring water. That's it.

The bowl was cleaned for the first time yesterday - more than 17 months after we brought Nemo home. I swear that this fish must eat its own poop. The water has remained crystal clear since the day we brought Nemo home, and the only reason we finally changed the water and cleaned the bowl was because Nemo (a vibrant red fish) started to change color, and we could see some excess food building up in the gravel.

Unlike the 28-cent Walmart goldfish (also purchased in December 2004 but died two weeks later - you get what you pay for), the average lifespan of a betta fish is anywhere from 1-3 years, and the average age of a betta fish in a store is six months. So we assume Nemo is almost two years old. Once again, we have a pet who is enjoying an uncharacteristically long life under their circumstances (I mean, come on - the poop-eating fish living in the same water for well over a year, still alive and feisty at an age when many betta fish have been flushed into the next life).

I swear that there are times when Buster and I look at each other as if to say, "who's going first, Short-timer, you or me?" Same thing when I look at Nemo. None of us has statistics on our side. We have to find our own staying power. I think faith and hope and stubbornness have kept me going so far. Maybe Buster's staying power comes from his merry disposition and the free use of his powerful voice. And maybe Nemo just has (excuse the expression) a high tolerance for crap. Maybe there are lessons to be learned from these tenacious creatures, so that I can join their ranks and push the upper limits of my lifespan.

Knee-Deep

...well, actually N.E.D.P. = No Evidence of Disease Progression!

MRI looked "beautiful" today, according to my oncologist. I wonder if Carlos (my hair stylist) gets any credit for that. (Speaking of Carlos - I FORGOT to ask my doctor about highlighting. I'll have to follow up...) And except for forgetting to ask about the highlights, I passed all my neuro tests with flying colors. Once again, being sober pays off. I also clocked in nine pounds lighter than last month, so that daily exercise (26 days so far) is also paying off.

Big thanks to everyone for your prayers. It was easy for me to be calm throughout this day, because any time I started to worry, a voice would remind me about the many prayers that were being offered on my behalf. And it really carried me through what is normally an agonizing moment.

So now we are busy planning something fun tonight to celebrate, and my N.E.D.P. brain is singing and taunting the Reaper, who was foiled once again:

All our times have come
Here but now they're gone
Seasons don't fear the reaper
Nor do the wind, the sun or the rain
We can be like they are
Come on baby... Don't fear the Reaper

A Little Entertainment During the Suspense...

"Good Riddance (Time Of Your Life)" by Green Day:

Another turning point, a fork stuck in the road
Time grabs you by the wrist, directs you where to go
So make the best of this test, and don't ask why
It's not a question, but a lesson learned in time

It's something unpredictable, but in the end it's right.
I hope you had the time of your life.

So take the photographs, and still frames in your mind
Hang it on a shelf in good health and good time
Tattoos of memories and dead skin on trial
For what it's worth it was worth all the while

It's something unpredictable, but in the end it's right.
I hope you had the time of your life.

It's something unpredictable, but in the end it's right.
I hope you had the time of your life.

It's something unpredictable, but in the end it's right.
I hope you had the time of your life.

Pray for Peace, People Everywhere

Remember that Christmas song, "Do You Hear What I Hear?" In my head I keep singing this line from it: "Pray for peace, people everywhere..."

I know that it's not Christmas. (Yay - I know the correct date - at least that neuro test passed!) Instead, it's MRI Eve. A time to pray for peace...and hopefully another accurate and reassuring scan.

We are coming up on nearly six months since my diagnosis of a cancer that has a 12-14 month statistical prognosis. The likelihood of tumor recurrence within the first 6-9 months is high. One news article once gave me the willies by talking about how "most" GBM patients see the first signs of a fatal recurrence within the first nine months. I have an uneasy feeling but strive to remain hopeful. After all, based on the way I can breeze through any neuro test (100...93...86...79...72...65...58...51...) and easily navigate a bike through my neighborhood, I would appear to be okay. So I hope that the MRI will agree.

There have been other nervous times before, and I was carried through those times on the faith and prayers of good family and friends. I look forward to that help again, for I know that many are praying (and some are even fasting) for me. Every one helps, and every one is appreciated.

Back to Life

Today included a "back to life" experience. I was reunited with Carlos, my favorite stylist. I finally have a head that can endure a third-party washing, combing, and styling (if they are gentle - my right side is still tender), and I was ready for a "Carlos" caliber style (because he is a miracle worker who can read my cancer-riddled mind and give me the hair that I want). So off I went today for my first "real" haircut in more than six months. It was awesome! Carlos was running behind, so he treated me to a complimentary hot towel conditioning - a very pampering experience - before I got my turn in the chair.

Together we surveyed the reality of my roots, which are quite deep, since my last highlight appointment was before my surgery. Even my husband's best efforts to "say something nice" have failed to conceal the brutal truth about my two-toned coif. But under the circumstances I have been both too sore to endure a foil wrap, and too wary of putting so many chemicals into my head. I promised Carlos that I would check with my neuro-oncologist to see what she thinks about highlighting a head with cancer in it. Hopefully she will sanction the proposal. If not, well, I can always go as Cruella DeVille this Halloween.

So, no highlights for today. But a hot towel pampering and a super cut and style from the miracle worker made me feel like I was back to the good life again.

God's Desk

Now that my home office is gorgeous again, I can survey the things that inspire me as I work. Over my desk are various reminders of professional achievements (framed certificates/college diploma, my article that was published the same month as my tumor diagnosis, etc.), reminders of personal achievements (my son's artwork, family pictures, etc.), and some things that really tickle me (gifts from former employees and co-workers, a framed copy of an advertisement that features my son when he was a baby/model, a box containing "CEO Barbie" - dressed in a pinstripe suit - so I could pretend I looked like that when I became president of a medical device company - the one whose ad features my son - and one book that influenced me as an adolescent second only to the scriptures: Real Women Don't Pump Gas). Hanging on the wall opposite my desk is a framed print of The Elder Sister, by William Adolphe Bouguereau, which along with a matching mousepad were gifts from two of my younger brothers who lived with us one summer. I also have a shelf with some antique medical devices and pharmaceuticals displayed, along with some antique medical books (including one ominous copy of Essentials of Neurology -- who knew??). It's hard not to walk into my office without learning a lot about me. Thank goodness it's not the huge mess that it used to be (and thank goodness I'm not, either).

In his book, 101 Exercises for the Soul, Dr. Bernie Siegel says that over God's desk there is a plaque that reads, "If you go around saying 'I've got a miserable life', I'll show you what miserable really is. And if you go around saying 'I've got a wonderful life', I'll show you what wonderful really is." Whether that is literally true or not, the concept is right on target. Misery does breed misery, and gratitude does reveal an abundance of blessings. Dr. Seigel goes on to say that "The future is unknown, and we should never let our fears, worries, and negative attitudes prevent us from enjoying the day and finding fulfillment, no matter what tomorrow seems to hold."

This is a natural time of fear and worry, awaiting this week's MRI scan. We don't know whether it will give us one more sigh of relief, or whether it will open a new Pandora's box. My dad put it well after I told him the results of my last MRI scan, when he said, "Of course it was good, and it will continue to be good until the Lord decides you are finished down here." (Hopefully cleaning my office wasn't the last thing I needed to do in this life!) He makes a good point. But when the medical team treats recurrence as a "when", not an "if" situation; and when "glioblastoma multiforme" automatically labels me in their world as the walking dead who will hopefully string along for a few extra months, it takes a concentrated effort to avoid absorbing that attitude. But no matter what the next scan looks like, I have to remember that my only guarantee is today - in some portion, at least. Even if I were somehow miraculously cancer-free. That's how it is for all of us. We have today. Tomorrow could bring anything - plummeting aircraft, freaky aneurysm, drunk driver, unsanitary restaurant workers, bird flu - or whatever. Today brings an opportunity to live, love, and savor. If I make it to Thursday, I will have an emotional ride through the MRI tube and a sentencing hearing with my oncologist. Whatever is, is. I know that I will have the resources I need to deal with whatever "is". If I spend each Today acknowledging the wonderful life that I have, and the great blessings that are always attending me throughout this experience, perhaps Thursday's outcome - whatever it is - will be an opportunity for God to show me what wonderful really is.

The Space Shuttle, Cleaning My Office, and Living with Cancer

It seems like a party game - what do these have in common?

I remember hearing a long time ago that the space shuttle consumes a huge amount of fuel and energy during the lift-off, and then once it has cleared the atmosphere and is able to orbit, it just coasts along easily.

This morning I was organizing my office - one room in my house that is always a disaster. I was doing my quasi-manic/depressive impression halfway through the process, where I looked around and got overwhelmed at the remaining amount of work to be done. I was exhausted (although - hooray - I did sleep pretty well last night), and I thought this just couldn't be done. For some reason, though, I remembered the space shuttle and thought that if I could just persevere for a little while longer, the task would start to get easier. And it did. Soon I was finishing up, and it was much more manageable. And now I'm sitting in a clean office, feeling pretty pleased with myself.

Someone recently asked me what it was like to live with cancer every day. Well, at first there was the initial shock and insult of the news, followed by an intense period of grief and adjusting to this new circumstance. It consumed a lot of energy and effort. But now I think I'm in that orbit mode. Don't get me wrong - it's not a breeze by any means. But it's easier to manage on an every day basis than it used to be. And sometimes I guess I have to leave orbit mode and persevere through some dips and dives -- like this week, with the dreaded MRI coming up soon. I have a choice: I can give in to the worry and crash and burn, or I can keep pushing on through until I am safely in orbit again.

Insomnia

I come by it honestly, as a third-generation insomniac. For as long as I can remember (even way back in my B.C. life) I would lie in bed with a steady stream of thoughts that wouldn't quiet down. Sometimes they would be worries. Sometimes it would just be a song that persistently replayed in my head. Sometimes they are just random thoughts - happy, sad, neutral, whatever - that want their time onstage.

One thing that has fascinated (and pleasantly surprised) me is how well I have slept in my A.D. life. That is, until very recently.

June 1 is my next MRI scan - the next peek into my brain to see if anything is growing there. Meanwhile, I am to be aware of - and report - any neurological symptoms, including the return of seizures. Thankfully (knocking wood) I have not had seizures for a long time. But I have a terrible fear of them returning, not only because they are so unpleasant, but because they may signal disease progression. I have an uneasy feeling about this upcoming scan and such an awful fear of seizures, that I am hyper-sensitive and paranoid about anything that comes close to a seizure. Any time I feel deja-vu, or start to feel a rise in my stomach, or even if I come near anything that has a strong smell, I start to panic and wonder if a seizure is coming on. And then I wonder if I am going to have a hysterical seizure simply because I am so afraid of them. Also, because these seizures started with the "smell nightmares" - where I would wake up with adrenaline rushing, followed by a funny smell - I have a fear of going to sleep and waking up with one of those again. On a few occasions - like tonight - I would start to fall asleep but would wake up with adrenaline rushing and heart racing. Over and over again. No funny smell, though, so hopefully I'm just experiencing some anxiety.

I read somewhere that if you embrace fear, it will fall asleep in your arms. I keep reminding myself that - okay - even if I have a seizure, it doesn't necessarily mean there is disease progression. And even if there is disease progression, it doesn't necessarily mean that the game is over. Acknowledging the fear helps minimize it down from a big monster to a little baby that will hopefully fall asleep in my arms.

And hopefully I can finally fall asleep in my husband's arms...

Milestones

I have a fervent wish to still be around when my son dons his graduation cap and gown, and tonight there is an opportunity to at least see one such moment. Jacob has his "Pre-K" class graduation tonight - in a ceremony complete with cap and gown. Pre-K graduation seems a little silly and contrived, but hopefully it will whet his appetite and give him a desire for many more graduation ceremonies to come. And hopefully this won't be the only one I get to attend.

Jacob is having some sentimental moments as he ponders the "goodbyes" from preschool teachers and friends. As he would tell me how much he misses someone, I let him know that when we love someone, we miss them when they are gone, and we are all the happier when we see them again. (Laying a foundation of understanding that hopefully he won't have to apply until he is an old man.)

We chose "Camp Mama-atta-homa" for his summer learning experience before he starts kindergarten in August. My first baby in kindergarten. It's exciting.

Meanwhile, my daughter, Emma (age 11 months) is threatening to walk. This milestone is imminent.

Kids grow so fast, because life in general moves so fast. On the one hand, I am so excited to see these milestones fly by, because maybe if they go fast enough, it will be easier for me to be around to see them. But sometimes it's just fun to slow down and savor the "today" moments, while it is still today.