Hope

Someone in my 2ofus4now support group had a question about hope, and I shared with her the following poem written by someone who survived GBM for eleven years (on old technology!). I couldn't resist sharing it here:

HOPE

Hope is hope, a feeling of trust,
Against all odds, we do what we must.
Hope is a confident expectation,
Not a guarantee of a realisation.

It thrives in the soul, beats in the heart,
But Oh what strength it does impart.
There is nothing false about this feeling,
It has no limit, it has no ceiling.

Hope inspires determination,
To reach a dream with anticipation.
No you cannot infuse it,
You cannot draw it into a vial and use it.

You cannot measure it by RADS,
or take its pulse when you're tired or sad.
But drink it is with great desire,
it's medicinal power can raise you higher.
Hope is truly free insurance,
it indemnifies with utmost assurance.

Hope rises above deep despair,
It lifts the hearts of those who care.
It isnt a panacea or cure for every ill,
It is a source of optimism, a place to find your will.

When stress and fear are set in motion,
Hope proves true as a stronger emotion.
No you dare not deny it,
You must not defy it.

Eternal they say it springs,
Of promises it softly sings.
It cannot be false, any more than false sorrow,
It's basic belief is 'There's always tomorrow'.

If hope is false, then surely I guess,
There must be false hopelessness.
What would it mean to have false hopelessness?
Perhaps that indeed it was true hopefullness.
So let's turn it around, or inside out,
Because hope is something we can't live without.

-- Rebecca Libutti, from That's Unacceptable (2001)

Believable!

As if yesterday's good news wasn't good enough...

I showed up for my infusion this morning and found out that I could get the full infusion (both Avastin and Carboplatin) because my lab results from yesterday were GREAT! My platelet levels jumped from 85K to 215K in just a few days! All the other counts were well within range. The way my bone marrow has bounced back (twice now) so quickly has been a welcome miracle.

As I headed toward the infusion room my oncologist called me into her office. She wanted to report to me that since our visit yesterday she had the chance to review the spectroscopy report from yesterday's MRI, and it was as she had expected: "Low perfusion; consistent with treatment effect." So it looks like the reason the blob hasn't changed much lately might be that it is scar tissue.

I'm having an Arnold Schwarzenegger/Kindergarten Cop moment: "It's not a tumor!"

Granted, there are still probably microscopic tumor cells floating around, waiting to get nasty. But so far they have been held at bay. Things are as good as they can be right now, and we are very grateful!

My first thought was, WOW - UNBELIEVABLE! But then I realized that, no, this is actually very BELIEVABLE. It's not like this is the first time I've seen miracles. It's not the first time I've experienced the power of prayer.

I guess this just isn't the time for me to go anywhere yet. For a while this morning I was wondering if I was going to have a moment of great irony as I sat in the infusion room, receiving chemotherapy in a chair right by the window as a really big thunderstorm blew through the area. I thought, "This would be funny -- getting a great MRI result and then biting it when the storm blows a window into my head!" But luckily it passed without incident. And I managed to successfully dodge all the crazy traffic on the way home.

I'm eager to know and do what is meant for me while I get to stay here. I hope it involves raising my kiddos until they are very old, since they were my earlier taste of miracles. It surely should involve finally getting some of the rooms in my house organized, because there are some areas that are really becoming...unbelievable!

I'm Olivia

One of my favorite characters on The Cosby Show was the precocious little Olivia (Denice's stepdaughter). When people would ask Olivia how she was doing, she would respond, "I'm still alive!"

Olivia is also one of my favorite characters in children's literature. This Olivia is a very girlie pig with boundless energy and an inshakable confidence in her ability to do anything. Between these two adorable characters, I have often regretted not naming my daughter Olivia.

I though of The Cosby Show's Olivia after leaving my doctor's office today. I'm still alive! And despite the efforts of the van that almost cut us off on the freeway driving home, I might actually get to stay alive for a little while!

The MRI scan was "good". My brain looks the same as it has for months now, with a tiny little spot on it. It's not known, but it's possible that maybe only scar tissue is left instead of a tumor. Or whatever it is, it doesn't appear to be growing or spreading or doing anything, at least. My doctor was very optomistic as she chatted with me. She confirmed that I was "knee-deep" (NEDP=No Evidence of Disease Progression).

We repeated my lab tests afterward, and depending on how they go I will either go in for a full Avastin/Carboplatin infusion, or just an Avastin infusion (which is less harmful to bone marrow). The latter is what we would do as a maintenance plan after a year. Based on how my MRI's are looking, my doctor didn't seem concerned about postponing the full infusion for now. And in fact, she even suggested that maybe the future could hold the possibility of getting to the point where we have to decide how long to stay on maintenance, if I remain in a NEDP situation. It was a good thing.

Once again, prayers on my behalf have helped me get this kind of result, and they also sustained me during the anxious moments of waiting to hear the result. Huge thanks to everyone who offered those prayers, so that we could spend this evening celebrating! And I can be my own "Olivia" -- still alive and energetic, and confidently anticipating all kinds of possibilities.

Here we go again

This happened right before my last MRI, and it has happened again: bad lab results.

My bone marrow is under attack again, and my platelet count is too low for them to allow my chemo infusion next week. Everything else is borderline, and my doctor hinted last time that I may not be able to continue chemotherapy much longer.

However, they will do more lab testing again on Tuesday, and hopefully I'll have a rebound. I rebounded quickly last time in a big way that according to my brother Dr. Jim, "has no medical explanation." Once again prayers were working on my behalf, and they are needed again.

This Tuesday's MRI also carries the ghost of October's scan. Once again we are doing an MRI with spectroscopy. Last time it revealed tumor progression. I'm hoping that won't be a repeat occurrence. If I were in charge of the miracles, I'd be going for an MRI that shows the opposite: a completely disease-free brain that doesn't need chemotherapy anymore.

But I'm not in charge of the miracles. I don't know what should be for me, but Someone else does. Someone whose plan for me is a plan of happiness. Someone who has a perfect and grand perspective.

Prince Jared and I went to the temple last night, and as we drove there we listened to a group called Libera singing "Be Still, My Soul". And throughout the evening I kept thinking of one particular phrase in that hymn: "Leave to thy God to order and provide."

Whether it's bone marrow, a healthy brain, or peace to handle adversity, God will order and provide whatever is needful and expedient for his purposes for me.

He always has, and so here we go again...

Real Moments

When I was sixteen my friend gave me a book called Real Women Don't Pump Gas: A Guide to All That Is Divinely Feminine. I liked that book so much, that to this day I have never pumped gas. Gotta be a real woman.

As an adoptive mother I often hear the term "real mom". As in, "What does Jacob's real mom look like?" "Is Emma's real mom tall?" and so on. I usually just respond with a smile and describe myself in detail. We love the birth mothers of our children. They gave our children life and beautiful healthy bodies, and lovingly placed them in our family, trusting that we would give these children all that they needed. And when they did that, they made us a "real" family--something that doesn't require the sharing of DNA.

The Velveteen Rabbit is a lovely children's story about a plush rabbit who becomes real, not by how he was made, but by the fact that he was loved.

The Real Women Don't Pump Gas (etc.) book has a chapter on Real Moms, including the following wisdom:

• Real Moms do volunteer work.
• Real Moms wear corsages.
• Real Moms believe in nepotism.
• Real Moms have ESP and know when their children are in trouble.
• Real Moms like the suburbs. They decorate their homes for the holidays.
• Real Moms wear earrings during the day.
• A Real Mom will go through the trash when a kid announces that he thinks he threw his bite plate in the wastepaper basket.
• Real Moms are never allergic to anything their children like. A real Real Mom will live with a cat that makes her sneeze for ten years. But if anyone suggests that her new, prized, expensive sectional sofa could make one of her children tear up for an instant, it would be on its way to Goodwill within the hour.

And Erma Bombeck, who was an adoptive mother, made her own list of what is "real":

• Real is what gets a part-time job to pay for a baton that lights up.
• Real is what hears, "I hate you" and still says "No".
• Real is what sits up until 3 AM when she has the car out and its raining.
• Real is hurting when she's in pain and laughing when she's happy.
• Real is emergency rooms, PTA's, music that deafens, lies, defiance, and slammed doors.
• Real is what shows up every day!

I was thinking about Erma Bombeck today when I had my own "real" moment to add to the list. For me this morning, "real" was running 1/2 mile to and from the elementary school on a day that threatened rain, wearing a purple and black outfit with feet crammed into too-tight, high-heeled sandals and toting a video camera, tripod, and various props so that I could be my son's magic assistant during his kindergarten talent show. It was awesome!

Not only was it a reassuring neuro test (kept my balance, remembered where to go and what my name was at the sign-in desk, remembered how to set up the tripod and the camera, and even remembered the magic tricks) but it was a REAL-ly precious moment to see my son be a gentleman in the audience while the other children performed, and then to help him do his charming act onstage. He pushed a coin through a handkerchief, turned a dollar bill upside-down with a folding trick, and pulled three flower boxes out of an empty paper sack. (Much thanks to his real Grandpa Ralston and his real Uncle Mike, who both taught him those tricks.)

The cancer glasses have the great ability to help sort out what is real and what is not, and it makes those real moments very precious. This morning's entertainment was hardly a Tony award-winning stage experience. But it was real. The expression on my son's face when he saw me walk in was very real and very precious.

I hope I will be there to walk in for many more real moments in his life.

Live Strong & Kiss Good

May 17 is Livestrong Day, the day Lance Armstrong marks as the anniversary of the day he "started living". (The day he was diagnosed with cancer.) Despite always having cancer on my mind (literally), I kinda forgot about Livestrong Day, because I always remember May 17 as my "kiss-a-versary".

Today marks 24 years from our third date, when Prince Jared planted his first smooch on me at my doorstep. We were friends for a long time before that, and I had been mooning after him for about six months. I guess he finally decided to be in love with me, too.

In a way, May 17 was the start of our life together as sweethearts. Nearly a quarter century later it is still a date that we both remember and celebrate. Nearly a quarter century later Prince Jared can still sweep me off my feet with his smooches.

They keep me living strong.

Barbie does Dallas

AAAAAAAAGH! Did that actually come off my fingertips? Should I blame the tumor? That sounds too awful! (Suggestions please for a new title!!)

Book Signing Barbie has been invited to do another signing event at Moon's LDS Bookstore in Dallas (northwest corner of Forest and Preston) from 2:00 - 4:00 this Saturday. It'll be a fun transformation from Baseball Mom Barbie (complete with a pink Yankees t-shirt for cheering on my favorite six-year-old Yankee) to Room-a-Zoom Barbie (accessorized with a seat belt and hoping not to have any interaction with Traffic Cop Ken) to Book Signing Barbie in a frantic half-hour from game time in Plano to signing time in Dallas. (I'm so bad--I'm actually hoping that the game gets rained out!)

Hope to see lots of blog readers at the store!

A time to be born

Today was a happy day -- it was time for my new niece to be born! My "middle liddle brother", Mike, and his wife Melanie have been staying with us for a few months between his MBA graduation and the start of his new job in Charlotte this summer, so that she could deliver their first baby here in familiar territory. It has been really nice having them around, and when I first learned that the baby was due in May I was hoping to still be around to welcome her into our family. (And I was -- hooray!)

The name of this tiny, beautiful little girl has yet to be determined. My son came with me to the hospital to see his new cousin, and he was in awe at the sight of such a new little person.

This event reminds me that for each of us there is a time to be born, a time to live, and a time to die. It took a long time for me to be a mom, and I think it is because my children needed to come at a certain time and in a certain way. Before then, it just wasn't going to happen. But when the time was right, the miracles occurred. Likewise, there were times during Melanie's pregnancy when she had cause for concern, but thankfully it was this little girl's time to be born, and she was able to overcome every obstacle.

I think the other end of life is similar. I always remember the scene in Forrest Gump, when he confronts his mother, who is dying. Forrest asks her why she is dying, and she responds very simply, "It's my time. It's just my time." I think that as long as I need to be here, I will continue to enjoy each new day and (thanks to the many prayers on my behalf) I also get to enjoy each accompanying miracle. And when it is my time to die, I don't think even the best of medical advancements will keep me here. (We'll certainly try, but even miracles are subject to God's will and design.)

As for today, it's my time to live and enjoy my niece's time to be born. It is time to enjoy seeing my brother and sister-in-law go through this exciting new chapter in their life together. It is time to watch my son marvel at the miracle of life, and to remember how we felt the day he was born. It is a time to remember that all things happen in their proper time and season, in accordance with a loving plan.

The Karate Kid (and Mom)

I've survived this far and while doing so, I have managed to sing three Messiah concerts, resurrect my clogging shoes and clarinet, and get a book published. So why not get a black belt in karate?

When I was in college I took a karate class, and I loved it so much, I joined the instructor's dojo for a few months. I made it all the way to an orange belt (it's the third level from the beginning, so it's not very far) and then I got distracted with trying to graduate from school and plan my wedding. It's been almost twenty years, but I remember it fondly. And it's a great workout for mind, body, and spirit.

I also thought karate would be good for my son, who is very athletic and coordinated. It's a nice all-season activity to complement his other sports, and it also teaches confidence and discipline.

There is a dojo close to home that teaches Kempo karate, so I signed us both up for a few months' worth of lessons. I studied American Kenpo; this is Shaolin Kempo, so there are some similarities and some differences. Because it is a different style I start over as a white belt, but hopefully it'll be like riding a bike.

We had our first lesson today, reviewing some stances, punches, kicks, and blocks. My son did very well, and I felt like I was back on the bike (just older and fatter and thinking of everything as a cool neuro test). Sensei Craig urged us to memorize the five animal forms of Shaolin Kempo, and their characteristics, as they are good to emulate:

THE TIGER: It represents courage, tenacity, and power.

THE DRAGON: It represents flexibility and inner strength.

THE LEOPARD: It represents timing, speed, coordination, and footwork. It is also very strong for its size.

THE CRANE: It represents balance, grace, agility and LONGEVITY (!), as well as concentration and patience.

THE SNAKE: It represents inner strength and endurance.

Of course, I would add the beagle (tenacity and playfulness) and the gorilla (for its grin). And if I can find some animal known for its ability to rejuvenate brain cells and destroy its own cancer cells, I'll be sure to add that to the mix!

Safely Dead

One of our pet hermit crabs died. It was one of three crabs that our son received on Christmas day. Its shell was painted like a ladybug. Not long ago, it insisted on digging and burying itself under the sand in the little home that it shared with two other hermit crabs (painted like Spiderman and Batman). We heard this "crunch, crunch" sound and watched the crab tunnel his way into solitude. Eventually it emerged from its shell and exoskeleton and roamed around "naked". A few days later it was dead. My husband thought it looked partially eaten by the other crabs. (Ew.)

I broke the news to my son after school today. He took it a lot better than a few years ago, when his very first pet, "Shark" the goldfish, died. (He grieved the goldfish for a long time.) This time he asked why the crab died, and then he basically shrugged and said it was too bad, but at least the crab was in heaven now.

Little ladybug crab is safely dead. No more worries.

I had a nightmare during my few winks of sleep last night. My son was doing some work on a ledge overlooking the entryway on the second story of our house. He miscalculated where he was and ended up falling and landing with a sickening thud on the first floor hardwoods. He survived, thank goodness, but my last memory before I woke up sobbing was our scramble to call 911 and carefully check his limp body to determine the extent of his injuries. It felt awful, and that feeling stayed with me most of the day today. When he was a baby I had a worse nightmare, where we were at the mall and he climbed over a rail and fell to his death while I screamed in horror. I still remember that nightmare every time we walk into the mall, as I clutch his hand tightly.

Meanwhile, my daughter is already going through her adventurous stage before the age of two. She literally licks her fingers and runs toward electrical sockets (luckily we keep them covered), and she likes to see how many stairs she can jump down. She doesn't want to get hurt, but she does enjoy the excitement. She gets held a lot in order to keep her safe, and she probably likes that, too.

Losing a child is the only thing that seems worse than brain cancer. I think it would make brain cancer seem like a welcome escape from the awful grief. I am grateful that my children are alive and well and willing to let me clutch their hands and hold them tightly. But I know people who have lost a little one, and my husband and I lost a really little one (long before it would have been born). I think that the only possible solace that can come in such an awful situation is the reassurance that little children are innocent, and that through the Atonement of Jesus Christ those who die before the age of accountability are "safely dead". They are spared the harm that can come in mortality, although they miss much of the valuable experience of this life (which is why we still clutch their hands and instinctively protect them). Of such is the kingdom of heaven.

I read a quote today from Elder M. Russell Ballard, who said that "Life isn’t over for a Latter-day Saint until he or she is safely dead, with their testimony still burning brightly."

I'm not a crab, and I'm not a little child. Like the crab, and like the child, I instinctively want to live--even if I'm feeling adventurous. "Dead" may not be so tricky for me (darnit) but "safely dead" with my testimony burning brightly requires a little more effort on my part, since I'm not an innocent creature. It takes a little effort to obtain and maintain the faith that sustains me. Effort to do all that I have promised to do when I made sacred covenants at baptism and in the temple. Fortunately I have survived long enough to have been given plenty of experiences that have strengthened my faith and my testimony.

(Still...if I can make the case to buy more time to work on that "safely" part...)

Book Signing Barbie

Years ago, when I became president of a small medical device manufacturing company my dad gave me a "Pinstripe Power" Barbie doll (dolls are a traditional gift from my dad). Pinstripe Power Barbie wears a dark pinstriped pant suit and comes with a newspaper, briefcase, and stuff. I keep it in my office next to my copy of Real Women Don't Pump Gas, and a framed picture of my son who, as a baby, modeled for a print advertisement for one of the company's products.

I was "Book Signing Barbie" in Utah for a couple of days this week, complete with a gray suit pinstriped in lavender to match my book, with an alternate skirt/lavender blouse ensemble. My primary accessory was a matching purple pen.

Earlier in the week I was "Livestrong Barbie", sailing through my neuro tests and getting a strong dose of chemotherapy. My outfit was comprised of my "extra credit" mules (because I really had to be good in order to walk straight lines on my toes and heels while wearing them) and an easily rolled-up shirt sleeve to accommodate the IV. Later I was "Gorilla Grin Barbie" at the school meeting, and really wished I had a good dental appliance as an accessory.

Book Signing Barbie was a fun role to play. I had the pleasure of meeting family, friends, and several people who only knew me online; I had a chance to give hugs and thanks to my favorite author and mentor, and I had the thrill of watching the BYU Bookstore hang a huge sign with my name on it right over my head as I sat with several other authors at a huge event during their women's conference.

I also had some gaggle therapy while I was there. Two of the gaggle arranged to chauffer me around to signing events, and we had a great evening at a sentimental favorite restaurant in Provo. We pulled in the other two by phone, and every single moment was a joyous opportunity to celebrate friendships that have lasted since our teenage years. Time and distance and circumstances have not faded these friendships at all. It takes a really great friend to drive from Pleasant Grove to Salt Lake City in the rain (picking up lunch along the way), in order to take me from one signing to the next, and to sit with me and help with logistics throughout a very long signing event, then take me to a third event before racing home in time for her son's soccer game. It takes a really great friend to fly in from California and rent a car in order to drive and assist me through four signing events on Saturday, and then race me back to the airport in time to catch my flight home. When we pulled up to the last store in an awful windstorm, she even offered to shield me from any flying objects. Even the gaggle sisters who couldn't be there because of family obligations were concerned about making sure I was covered. These friends are amazing.

Despite feeling the after-effects of this week's chemo infusion, I was able to navigate the signing events with a happy face and a constant feeling of awe that I was doing things that were not expected for a glioblastoma multiforme patient in the sixteenth month following diagnosis. But as my brother Jim said a long time ago, there is no clinical history of glioblastoma multiforme in someone with my DNA, my lifestyle, my medical history, and my purpose in life. Who knows what I will be capable of doing, and for how long? Who knows that about anyone, even if they are cancer-free?

While I was at the BYU Women's Conference on Friday I heard many inspiring things, but one in particular came from Ardeth Kapp (my favorite author). She suggested that instead of just wondering "why me?" in our lives, we should ponder "why me...why now...why here?" The reason being that we are all here...now...for an important purpose. It is exciting to ponder the experiences and circumstances that we have in our lives, so that we can figure out how best to magnify them and put them to good use. I am certain that my purpose isn't limited to having a Book Signing Barbie moment. That was just a fun opportunity to savor the many blessings that surround adversity, making it easier to bear. And it was a reminder that I have been given a life (and a good one at that), and it is my responsibility and opportunity to make something good of it.

What will tomorrow bring?

What will tomorrow bring?

Man, if I knew that, I could triple my billing rate for my clients! I would also feel a lot less suspense waiting for MRI results. (I'd just feel the suspense a day earlier).

The truth is, none of us knows for sure what tomorrow will bring. We just know what we have planned.

Assuming things go as planned, I have a neuro test followed by a long chemo infusion tomorrow. This is a good thing, because my labwork came back good enough to proceed with treatment. I still have bone marrow. (Never take your bone marrow for granted!)

And assuming things go as planned, the day after tomorrow I will be recovering from chemo, and then I will have a meeting at my son's school. Despite our efforts to protect him, my illness has been a source of stress for him, and he started having behavioral problems at school right after my surgery. They have been minor and understandable, but we have learned that going to an award-winning school can be both a blessing and a curse. I have been warned by parents and pediatricians to watch out -- these award-winning schools are the quickest to label kids. If I had an 11-year prognosis I would home school him, because he's so darn smart and he did great at "Camp Mama-atta-homa" last summer. (Before my property values plummet as a result of this blog, I should mention that the school really does provide a fantastic curriculum, and is a great one for those children who are not facing a family crisis, and who are otherwise able to avoid acting like a five-year-old while in kindergarten.) Thank goodness for my mastery of the gorilla grin, as I will be using it during the meeting. (I've posted about this before--when gorillas are about to attack, they bare their teeth and appear to be smiling.)

After the meeting I get to hug my family goodbye and board an airplane. I am traveling to Utah for my first book signing tour! My alma mater, Brigham Young University, is having a Women's Conference this week, and the BYU bookstore is having a big book signing event with lots of authors, and I was invited to participate. I have other signings scheduled during my trip. Here's my schedule, for those who are in the area:

Thursday May 3
10:00-12:00 Seagull Bookstore, 1720 S. Redwood Road, SLC.
12:30-2:30 Seagull Bookstore, 5720 S. Redwood Road, Taylorsville.
3:00-5:00 Seagull Bookstore, 1625 W. 9000 S., West Jordan.

Friday, May 4
10:30-12:00 BYU Bookstore during Women's Conference
4:00-6:00 Seagull Bookstore 677 N. State Street, Lindon.

Saturday, May 5
10:00-11:00 Seagull Bookstore, 2250 N. University Pkwy #C56, Provo
11:30-12:30 Seagull Bookstore, 331 E. University Parkway, Orem
1:00-2:00 Seagull Bookstore, 1326 S. University Ave., Provo
2:30-3:00 Seagull Bookstore, 111 S. State Street, Orem

I haven't traveled alone since my head got cracked open. My travels have all been with family. Luckily I will be seeing and staying with family and friends, but I will miss being with my husband and kiddos, even for just a few days. But if things go as planned we'll have a sweet reunion Saturday night. And naturally, that thought leads to the analogy of what another tomorrow might ultimately bring (hopefully not for a LONG time). This disease creates the possibility of leaving my family behind again for a while. I'll hopefully be in a place where I can associate with other family and friends, although I will miss being with Jared and Jacob and Emma. It will only be a temporary separation, however, and we'll have a sweet reunion again -- one that will last forever.

After all, as Tony Snow has mentioned while discussing his own cancer experience, "God doesn't promise us tomorrow, but he promises us eternity."

Enjoy today!

Playground in (what's left of) My Mind

I've been working really hard today, and I guess it must have tickled whatever is left in my mind that conjures up old memories. I kept thinking of a song that I loved back in 1973 when I was about my son's age, called "Playground In My Mind", recorded by Clint Holmes. It's one of those that will stick in my head all day. So with my apologies to whoever wrote it, I had to create my own version:

"Playground In (What’s Left of) My Mind"

When this old world gets me down

And there's too much cancer to be found

I close my eyes and soon I find

I'm in a playground in (what’s left of) my mind

Where the children laugh and the children play

And we sing a song all day:

"My name is Krista, I had some chemo,

Radiation, and surgery, too.

But I’m still singing, dancing, and writing;

That's what I'm gonna do"

Oh the wonders that I find

In the playground in (what’s left of) my mind;

Although it's soaked in chemotherapy,

Close your eyes and follow me

Where the children laugh and the children play

And we sing a song all day:

"My guy is Jared,

And we’ll get married.

And we’ll adopt a baby or two.

We're gonna let them visit their grandmas

That's what we're gonna do."

"Jacob and Emma,

I’ll be your Mama,

Daddy and I will always love you.

We're gonna let you visit your grandmas

That's what we're gonna do."

See the little children

Living in a world I don’t wanna leave behind

Happy little children

In the playround in (what’s left of) my mind.

Speaking from experience

There's nothing like finding a use for adversity, to give it some meaning. Just like the oyster, who endures irritating sand and uses it to make something valuable (a pearl), I have found myself with a couple of pearls of wisdom, thanks to the experiences that I have been blessed to be able to endure so far.

I was asked to speak at a recent stake women's conference at my church last weekend, on the topic of "These Things Shall Give Thee Experience". Naturally, I jumped at the opportunity to fill that assignment, mostly because I'm so glad that I still CAN do it, but also because it is a chance to use my "experience" to hopefully share something of value. Afterward I got a phone call from someone who has asked me to speak at a young women camp on the topic of finding joy in any of life's circumstances. I think it's a great idea, because sometimes when we're young we think life is supposed to unfold like a perfect fairytale, and so it may be useful to let them know that sometimes things don't work out the way we plan--but we can still be optomistic and make great things happen in our lives.

My "experience" talk is based on LDS scripture found in Doctrine & Covenants 122:7-9, which is the Lord's reply to Joseph Smith, who was suffering extreme persecution:

"And if thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good. The Son of Man hath descended below them all. Art thou greater than he? Therefore, hold on thy way, and the priesthood shall remain with thee; for their bounds are set, they cannot pass. Thy days are known, and thy years shall not be numbered less; therefore, fear not what man can do, for God shall be with you forever and ever."

When I was young and inexperienced I did not understand how horrible tragedies could give experience and be for our good. But now I realize that the Lord is so good, he can make good things out of anything that happens in our lives, if we let him. He did personally descend below all that we would ever have to face, and so he knows exactly how to help us and save us. And it's good to realize that our days are known and won't be numbered any less, and that no matter what happens in this world, God will always be with us.

I'll leave a couple of favorite thoughts for the day -- some of my favorite quotes about this subject of life's experiences:

“No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. All that we suffer and all that we endure builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God…and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire..." --Orson F. Whitney, in Faith Precedes the Miracle

“This life experience is designed for our growth and progress. Our trials will not be more than we can handle, but they cannot be less if we are to fill the measure of our creation.” --Ardeth Greene Kapp, in Rejoice! His Promises Are Sure

“If we looked at mortality as the whole of existence, then pain, sorrow, failure, and short life would be calamity. But if we look upon life as an eternal thing, stretching far into the premortal past and on into the eternal post-death future, then all happenings may be put in proper perspective...Is there not wisdom in his giving us trials that we might rise above them, responsibilities that we might achieve, work to harden our muscles, sorrows to try our souls? Are we not exposed to temptations to test our strength, sickness that we might learn patience, death that we might be immortalized and glorified?...If all the sick for whom we prayed were healed, if all the righteous were protected and the wicked destroyed, the whole program of the Father would be annulled and the basic principle of the gospel, free agency, would be ended. No man would have to live by faith...Being human, we would expel from our lives physical pain and mental anguish and assure ourselves of continual ease and comfort, but if we were to close the doors upon sorrow and distress, we might be excluding our greatest friends and benefactors. Suffering can make saints of people as they learn patience, long-suffering, and self-mastery." --Spencer W. Kimball

Things aren't always what they seem

I think twelve days is my record for CDWB (consecutive days without blogging), and I really don't want to beat that.

Things aren't always what they seem. I'm still around. I'm still having fun. Easter was once again a wonderful reminder that no matter where this cancer experience takes me, the Savior's work was perfectly finished in order to ensure that I can overcome anything that happens to me. Shortly after Easter weekend (which included singing Messiah and marveling that I was still able to enjoy that wonderful experience) I discovered that I had depleted all my energy, and I spent a while feeling lousy. Not too lousy, but lousy enough to lay low for a while.

With all that energy drained, and with the earlier dip in my CBC's (which rebounded just enough for another round of chemo) I was convinced that my next panel of labwork would show that I was anemic. But things aren't always what they seem, and my results came out good enough for more chemotherapy today. Maybe all that fatigue had something to do with my body's refusal to sleep as much as it should.

Speaking of things not being what they seem, I have to share a favorite story that I once received in what I like to call "faith-promoting emails":

Things Aren't Always What They Seem
--Author Unknown

Two traveling angels stopped to spend the night in the home of a wealthy family. The family was rude and refused to let the angels stay in the guestroom of the mansion. Instead, they were given a space in the cold basement.

As they made their bed on the hard floor, the older angel saw a hole in the wall and repaired it. When the younger angel asked why, the older angel replied, "Things aren't always what they seem". The next night the pair came to rest at the house of a very poor, but very hospitable farmer and his wife. After sharing what little food they had, the couple let the angels sleep in their bed where they could have a good night's rest. When the sun came up the next morning the angels found the farmer and his wife in tears. Their only cow, whose milk had been their sole income, lay dead in the field.

The younger angel was infuriated and asked the older angel "How could you have let this happen!? The first man had everything, yet you helped him. The second family had little but was willing to share everything, and you let their cow die." The older angel replied, "Things aren't always what they seem. When we stayed in the basement of the mansion, I noticed there was gold in that hole in the wall. Since the owner was so obsessed with greed and unwilling to share his good fortune, I sealed the wall so he wouldn't find it. Then last night as we slept in the farmers bed, the angel of death came for his wife. I gave her the cow instead. Things aren't always what they seem."

Darn--too bad we don't have any cows, in case some traveling angels come by. But it's nice to know that our limited view of things can be so flawed. That's why we need to trust in the Lord instead of the arm of flesh.

Handel-ing Messiah

Today was the final rehearsal before our Messiah performance tomorrow night. (That's tomorrow night, Easter Sunday, at 7 pm, 2801 El Dorado Parkway, McKinney, Texas! Be there!)

For the third time since having my right brain assaulted by knives, radiation, chemicals, and tumor cells, I will be singing with the choir. I will be singing a duet with my husband. And I will be singing one of my favorite solos. As the orchestra began with the overture, tears of gratitude filled my eyes. Messiah is back in my life. And more importantly, the Messiah of whom we sing is in my life, blessing me to be able to enjoy this moment.

Contrary to conventional wisdom, I'm not dead. I'm not tone deaf. I haven't lost my memory. I sang most of it off-book today, because I was a little tired from Thursday's chemotherapy and I felt too lazy to stand and hold my music for three hours. All the assailants that would have taken my life, my musical ability, and my memory were no match for the power of prayer and the tender mercies of the Lord and a feisty spirit.

Hallelujah!

What a difference a day makes

Yesterday morning I woke up with a nasty dull ache in my stomach and a lingering, unsettling feeling--despite the "good" MRI--as though it somehow wasn't being processed as good news.

Fortunately, however, the day quickly improved. I was showered with encouraging phone calls from family members. And then I got an assignment to speak at an upcoming women's meeting at our church, which immediately gave me something exciting to focus on. My son came home from a good day at school--his third one in a row--which qualified him for a fun lesson in making marshmallow crispy treats with me. My sister-in-law, who is in the hospital gestating our future niece, loves those treats, and Jacob was so cute and happy, fixing her a plate of them, along with a card that he lovingly scrawled a message on.

A few people let me know that they received the latest Deseret Book catalog, which features my book, and our book group also met last night at my house to talk about my book and get their copies signed.

Somewhere in the midst of all these fun things, I finally got the phone call I had been hoping for: the new labwork that they did on Monday came back much better than last Thursday's results. I can have my regularly planned treatment this week. The quick recovery of my bone marrow is nothing short of miraculous, so big thanks again for the many prayers that helped bring that about. What a crazy life - to be in a position where "getting" to have chemotherapy is something to be excited about.

Needless to say, I awakened this morning with no aching pit in my stomach; just the usual flood of "to-do" tasks for the day and a feeling of gratitude that I have another day of life and things to do with it.

Thank goodness it's April 2nd...

I'm so glad it wasn't April Fool's Day today, because I didn't want to be waiting for a punchline if I heard anything I didn't like. We did joke, though, about the blood pressure monitor, which kept acting up on me. Maybe the machine thought it was still April 1st.

The good news was that today's MRI results were "good". The scan looks almost identical to previous scans, so anything still remaining may just be scar tissue or something like that. Of course, next time (in 8 weeks) I get to do a spectroscopy scan to know for certain. I was assured that the spectroscopy was not ordered because of anything worrisome, but as a routine practice every six months. Neuro tests were minimal, which was a good sign. (Didn't seem necessary to evaluate clinical effects if there was no evidence of disease progression.)

The bad news is that although my treatment seems to be working well, it is becoming less tolerable, at least as far as my bone marrow is concerned. I'll know the results of my labwork tomorrow, and that will dictate what we do next for treatment. Ideally they wanted me to be on my current treatment for a year and then put me on a maintenance program, but I learned that many patients can only handle six months of this regimen. I might get to squeeze out a couple more months if my blood cell counts can bounce back up. Meanwhile, I may have to postpone or pare back some of my treatment. We're not sure how this will play out, and in our discussion I also learned some things that I'd rather not think about. So I left with an uneasy feeling for the rest of the day, although I was somewhat relieved that at least for now things were better than they could have been. But I think I'm just haunted by previous bad news, and I'm creeped out by more exposure to the gruesome realities of what seems inevitable, although hopefully not until sometime in the far distant future.

What helped a lot was a small voice that kept whispering to me, "Trust not in the arm of flesh." I have a great oncologist, but despite her expertise in this matter she is not all-knowing. She has no cure for me (yet) but she has some good tricks up her sleeve and she may only be one of many tools that the Lord is providing. None of us knows all that will be accomplished in my life, and how long I have in which to get it done. None of us knows what is around the corner -- good or bad -- and while sometimes we are hit by tragedy we can also be surprised by marvelous miracles. (&& --Fingers crossed for the latter.)

Speaking of miracles, we had our family home evening lesson this evening on the Easter story, and the ultimate miracle of the Resurrection. As we spent our time immersed in this topic with our son, it was a sweet reminder of the hope that remains constant, regardless of whatever happens with this nasty cancer. That's what I can rely on, even more so than what good clinical experts might conclude.

And meanwhile, even though there's a residual icky feeling that wants to linger, I'm happy to know that at least for today I'm still in the game.

Take no thought for the morrow

Today it's easy to "take no thought for the morrow". There's nothing to worry about tomorrow, except whether we'll have a good turnout for choir practice.

It's a little harder not to take thought for the marrow, as in the marrow of my bones. The chemotherapy has done its destructive work on my bone marrow, so my white blood cell and neutrophil counts are low. Hopefully the chemotherapy did worse damage to my tumor cells. And hopefully my counts will bounce back up quickly. They will do more lab work on Monday, and if my counts are still low they will postpone my chemotherapy treatment until my counts go back up, which is both inconvenient and scary. But as they explained to me before, this kind of situation puts me "between a rock and a rock", where I die either from infection or from interrupted cancer treatment; the latter taking a little longer. (This is where I remind myself that I'll go when I'm supposed to go, and if it's not from infection or cancer it might be by Mack truck or freak lightning strike.)

I'm hoping for good results with Monday's labwork. Monday is not "the morrow", but it's the day after the morrow. (Maybe that's why it's still on my mind.) Monday is a day for collecting other important information, too. It's MRI day again. That nervous picture day for my brain; the breathless ritual that repeats every eight weeks. If all goes well, it will mark six months since my last recurrence, and if I can go six more months without a recurrence it will be a good milestone, and I will have earned the ability to coast along on maintenance chemotherapy that isn't as damaging to bone marrow. If Monday's MRI has different news, then the battle takes a new direction. It's hard to ignore.

So I'm not thinking about "the morrow" (although I am vacuuming the living room, since choir practice will be held here); just the marrow and the day after the morrow. They motivate me to pray for whatever I need to face the days ahead.

Tribute to a friend

My favorite teacher passed away today. He was diagnosed with cancer last fall, and just barely made it past his original prognosis before succombing to complications.

I got to know Terry Tucker when I was in ninth grade, and my friends and I decided to take a clog dancing class. Our high school had a dance team called Cloggers West, and we were eager to join this team, which had already earned the distinction of "age division world champions" at the world clogging championships in Fontana, North Carolina. I remember being elated that we were able to join the "farm team" in our sophomore year in high school, in the hopes of being selected for the real team as juniors and seniors.

I was chosen. My best friends were chosen. A really awesome guy named Jared was chosen. Our days of practicing, performing, touring, and competing were tiring but fun. Mr. Tucker taught us so much, and coached us well to strive for excellence. I choreographed a routine for the group one year, and last fall he made it a point to thank me for that long-ago contribution. He said that the group continued to open their shows with it for many years. To this day I remember the music (Foggy Mountain Breakdown) but I have very little memory of the choreography. (Darnit! I wish I had a videotape!) But anyway, he was always so positive and appreciative of any little thing that we did, and he always encouraged us to be our best.

He also let me sing in the high school choir. That awesome guy, Jared, sang there, too. Many of my friends did, too. Jared sang in the bass section, and I was an alto. I am still an alto. Jared is a bona fide first tenor.

I am ever grateful to Mr. Tucker for helping me cultivate talents that are still a joy to me, and for giving me activities that fostered some of my most treasured relationships. I married that awesome guy, Jared. My "gaggle" of high school girlfriends are all from choir and Cloggers West. I still have my competition trophies and pictures of those fun days. I still have my dance partner, and we love singing and dancing together. I am so glad that I thought of Mr. Tucker when I visited Utah last fall (before we knew he was sick), and he was kind enough to come and see our Evening Song choir performance on Temple Square. He kept thanking us for things that we did for him, when in fact he was the one who deserved the gratitude.

We graduated from high school more than two decades ago, but the positive ripple effects of this great teacher's influence will continue to bless our lives.

A long time ago I mentioned a poem that a friend shared with me, and I think it is very fitting for this great teacher and friend:

So let me live that when I die
A tear will come to every eye.
In every heart there'll be a spot,
An empty place where I am not.
So let me live that when I'm gone,
Kind thoughts of me will linger on.
And folks will say with grief inside,
"I kind of wish he hadn't died."