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.