Sunday, December 30, 2007

Hallelujah, Merry Christmas, and Happy New Year!

I know -- many two year olds don't blog. (Or if they do, it must not be very often.) However, even though I recently enjoyed celebrating my second "birthday" (the end of A.D. Two) I should blog like a quadragenarian on steroids.

Cancer in my right brain didn't stop me from singing Messiah again this Christmas, and neither did cold and flu season! (Hallelujah!) It was a wonderful experience, singing two back-to-back performances in a full house. There is always a thrill listening to the orchestra begin with the overture, because it's usually when I'm thinking to myself, "Wow -- I'm really still here, and I'm really going to sing this again!" The first choral piece is "Glory to God", and I use that as a last little warmup and check of my voice. Usually my first aria follows shortly thereafter: "O Thou, That Tellest Good Tidings to Zion". I sing it, thinking of the good tidings of the Savior's birth, and all that it means for us. And I am reminded of the good tidings that I have enjoyed during another year of miracles. My next aria was "He Shall Feed His Flock Like a Shepherd," and ever since I was diagnosed with cancer and began worrying about my two children I gained a new appreciation for the words:

He shall feed his flock like a shepherd, and he shall gather the lambs with his arm.
And carry them in his bosom, and gently lead those that are with young.

A soprano follows, singing:

Come unto him, all ye that labor
Come unto him, ye that are heavy laden, and he will give you rest.
Take his yoke upon you and learn of him
For he is meek and lowly of heart, and ye shall find rest unto your souls.

(Amen. I've enjoyed that rest. I've also enjoyed being gently led through life along with my "young".)

Toward the end my husband and I sing a duet: "O Death, Where is Thy Sting?" I try not to make it sound like a challenge, but rather an acknowledgement that the Messiah takes the sting out of anything we face in mortality. There is a choral response that is often left out of performances, so I have only heard it in recordings:

But thanks be to God, who giveth us the victory through our Lord, Jesus Christ.

I know people who have lost loved ones, or who have suffered other tragic events close to Christmas time. My own cancer diagnosis came about two weeks before Christmas, and I wondered if that would taint the holiday for us. But I later realized that Christmas was a fitting backdrop for any life experience -- happy or sad. Because Christmas is a celebration of the birth of the One who gives us victory over sin and mortality. He is "ris'n with healing in his wings."

Christmas has been wonderful this year, not only because of the two prior Christmases that I thought might be my last, but also because I have been able to share it with so much family. All of my brothers came to visit with their families, and it was so fun to be together again. Our last time all together like this was in Manhattan during Thanksgiving 2006. It's nice to have family gathered around for non-funeral occasions! (I hope we have more!)

We'll soon be ushering in the new year. Each new day feels miraculous, and seeing another year roll around is even more exciting. I hope I see the ball in Times Square drop many more times, and I hope I get to kiss my husband each time it does.

Reflecting on the year that has passed, and on all of the years that preceded it, I think of the words from one of the songs in Michael McLean's The Forgotten Carols:

All I ever wanted, all I ever dreamed of,
Everything I hoped, and all the things I prayed for
Couldn't hold a candle to what I've been given;
I've been given what I need.

Wednesday, December 12, 2007

I've got half a mind to share this one...


A couple in their nineties are both having problems remembering things. During a checkup, the doctor tells them that they are physically okay, but they might want to start writing things down to help them remember.

Later that night, while watching TV, the old man gets up from his chair. "Want anything while I'm in the kitchen?" he asks.

"Will you get me a bowl of ice cream?"


"Don't you think you should write it down so you can remember it?" she asks.

"No, I can remember it. "

"Well, I'd like some strawberries on top, too. Maybe you should write it down, so as not to forget it?"

He says, "I can remember that. You want a bowl of ice cream with strawberries."

"I'd also like whipped cream. I'm certain you'll forget that. Write it down," she says.

Irritated, he says, "I don't need to write it down -- I can remember it! Ice cream with strawberries and whipped cream! I got it, for goodness' sake!"

He toddles off to the kitchen. Twenty minutes later the old man returns from the kitchen and hands his wife a plate of bacon and eggs.

She stares at the plate for a moment and asks, "Where's my toast?"

(Much thanks to nurse Charlie for sharing this one with me right before my chemo infusion! Between the Avastin and the natural killer cell boost from the good laugh I had over this one, I think any last tumor cell crumbs don't stand a chance.)

Happy Birthday to Me

...or maybe Happy Birthday tu-mor...
...or maybe Happy Birthday -- TWO MORE!

It's 12/12. I've survived two years. Based on Lance Armstrong's view that his diagnosis date marked the day he "started living", I'm enjoying the second birthday of my new life. And I got an A+ on my neuro exam yesterday. Time to break out the hats and horns.

One more year, and I would reach "long-term survivor" status. Two more years (two more with the tumor) and I'd get to see my son baptized without waving from a cloud. I might even have my black belt by then. Three more years, and I'd be a complete freak of nature. (A happy one, however.) And who knows...maybe there will be a cure somewhere in there, or at least a treatment that lets me hang on until the cure is found. Until then I'm hanging onto my good medical team and many many prayers.

I just hope I'm not entering the "terrible two's"...

Sunday, December 02, 2007

To "bee" or not to "bee"?

(I need to "bee" posting to my blog more often -- I think I set a new record for space between blogging...yikes!)

My husband's parents came to visit during the Thanksgiving holiday, which is one of our favorite holidays (even though every day becomes Thanksgiving Day when you have cancer and are still alive). While they were in town we took them to the Mary Kay building where my husband works, to see the Mary Kay Museum. Among the many fascinating artifacts are items that symbolize the bumble bee. Mary Kay Ash used the analogy of the bumble bee to reinforce her positive, "can-do" attitude. Aerodynamically, the bumble bee shouldn't be able to fly, but it does. On Friday night we took the kids to see The Bee Movie, where they mention the same thing.

Mary Kay Ash said that bumble bees fly because they don't know that it's not aerodynamically feasible. She's right -- they don't have the ability to doubt their possibilities, so they just do what they have to do. People aren't as lucky. Sometimes we only know enough to be dangerous, and it's too easy to let information work to discourage and defeat us. I've heard the question asked before: "What would you try if you knew you could not fail?" And my karate teacher has explained that a black belt (ranked person) is "just a white belt who didn't give up".

With cancer there are many things that can cause discouragement, from the initial diagnosis to days that don't feel so good, to days when setbacks occur. But I was taught by an enthusiastic cancer survivor (who trounced her odds) that it's important to avoid giving into discouragement, clinging instead to hope. Norman Cousins (who laughed himself into remission and became a best-selling author) would agree.

Bees aren't the only ones who (literally) fly in the face of conventional wisdom. I think there is a reason why the scriptures caution us against trusting in the "arm of flesh". Not that secular learning and knowledge aren't important, but sometimes we let our universe be confined to what we can see and touch and empirically demonstrate, and then we miss out on a real universe of possibilities.

A bee has a fat body and tiny wings, and based on available knowledge, it shouldn't fly. I have been diagnosed with a disease that claims most people within a year, so based on available knowledge I shouldn't be expected to be alive today (especially since I had tumor progression occur during the first year of treatment). But somehow I managed to "bee" alive today--with my book in print and a purple belt in karate to boot.

I have subjected my right brain to surgery, radiation, and chemotherapy. Based on available knowledge, my brain shouldn't be able to process music as well as it used to. But somehow I managed to "bee" singing today! I actually sight-read music better than before. And within a few weeks, if I can manage to fend off cold season, I am slated for my fourth Messiah solo performance since my cancer diagnosis and surgery. Previously I had never had this many opportunities in such a short period of time.

My story is not that unique. Statistics aside, I am meeting more walking miracles every day. Trust not in the arm of flesh.

The Apostle Paul struggled with a "thorn in the flesh", which was not removed despite repeated prayers for healing. Yet he gloried in his infirmity and testified, "I can do all things through Christ which strengtheneth me." Paul decided to "bee". And he's right. No matter what challenges or obstacles we face, we have the choice to either "bee" or "not bee", when it comes to realizing the possibilities before us, based on where we chose to put our trust.

Wednesday, November 14, 2007

Clear headed

Well, 2007 is the first year with all good MRI scans! (Hopefully the first of many!)

Everything looked exactly the same today as it did in September, which is a good thing. My neuro test was great, too. Apple, Fox, and Popcorn were the three words to remember, and I even had to correct the nurse practitioner, who was drawing a numeral six on my hand while my eyes were closed, but she was accidentally drawing it backwards.

And there was good news on top of good news -- I had lost four pounds, too.

Unless I develop any weird symptoms I won't have another scan for eight more weeks. I'm a third of the way toward going treatment-free, if things continue to go well.

Much thanks again for all the many prayers that made this possible and bearable!

Tuesday, November 13, 2007

Things to think about...

As I write this I am about 10 hours away from my appointment in the MRI tube, and about 12 hours away from hearing the verdict. Instead of over-analyzing every possible body signal and working up my anxiety, I decided to come up with a list of things to think about, to distract (what's left of) my mind:
  • how to spell pneumonoultramicroscopicsilicovolcanoconiosis
  • how to use that word in a sentence for the "please write a sentence here" section of my patient neuro test form
  • mental rehearsal of upcoming Messiah arias
  • decide: what joke should I share in the chemo infusion room (the one that always comes to mind is: Q. "What is an insomniac dyslexic agnostic?" A. "Someone who stays up all night wondering if there is a Dog.")
  • mental review of karate Pinions # 1, 2, and 3; defense maneuvers # 2, 3, 5, 6, 7, and 18; and kempos A, B, C, D, and E.
  • brainstorm ideas for my "can't buy it" Christmas present for my husband (our annual tradition)
  • brainstorm ideas for celebration activity if we get good news
  • create mental picture of healthy glial cells holding up a sign during the MRI that says, "Really, guys -- it's all clear here!!!"
  • construct mental list of words that seem to contradict their own meaning (like "phonetic", "abbreviated", and "monosyllabic")
  • try to remember the list of the 2-letter words that are legal in Scrabble
  • debate practice -- which was named "orange" first: the color, or the fruit? (pick one and defend)
  • sing the alphabet backwards (my son and I like to do this for grins)
  • decide: which of the dozen books I have in embryo form will actually become a manuscript
  • ponder: why do bats have nipples under their armpits?
  • happy picture slideshow: my son's grin with his two front teeth missing, my daughter in her new saddle shoes (like the ones I used to love wearing as a kid) and my husband's happy face when he comes home after driving around in Mustang Krista and says, "I love my car!!"

...and, of course--try to count all the prayers that will carry me through this process.

Monday, November 12, 2007


Twenty-three months of living strong -- and long -- compared to what I was told to expect. Twenty-three months of disregarding statistics and learning to expect miracles.

(Speaking of miracles, my dad's surgery went very well, and we are once again grateful for all that works together for our good.)

On Saturday we went to Six Flags for my husband's annual company picnic. I looked wistfully at the rollercoasters that are now off-limits to me, and then I shook it off, realizing that a few minutes of screaming fun on the Titan or Mr. Freeze would hardly be worth risking a brain hemhorrage. (Life lesson: live in the moment, but don't let momentary thrills rob long-term goals.)

I also remembered that the Six Flags picnic in November 2005 was the day before I had my first known seizure. We don't know how long I had glioblastoma before becoming symptomatic, but we know I have been living with it for at least two years. "Living" being the key word.

The nurse called with my lab results on Friday. "You can eat raw fruits and veggies and run down the street with scissors" was the message. It's her funny way of letting me know that my white blood cells and platelets are still at good levels, and I'm tolerating my chemotherapy. (Hopefully any tumor cells are not so lucky.)

There were other reassuring signs of life this weekend. I got an email the from a friend, congratulating me for appearing in this fall's issue of BYU's alumni magazine. This weekend I also learned how to spell "pneumonoultramicroscopicsilicovolcanoconiosis" (a kind of "black lung" disease, relating to the inhalation of fine silica dust found in volcanoes; and more importantly, it's the longest known word to appear in an English language dictionary and something my 26-year-old brother can spell easily). I noticed and corrected my own spelling of the word "isthmus" in my Ode to Thy Roid. (Blog reader neuro test: did you catch it when it was misspelled i-t-h-s-m-u-s?) My son and I reviewed the material from last week's karate lesson, and I remembered all that we learned about Pinion #3, the new form we need to master for blue belt level.

But I still had to search for my shoes as we were leaving for church yesterday. I remain the walking miracle with a question mark on my head. (Figuratively speaking, but also literally, as the surgical scar on my scalp is question mark-shaped.)

We'll soon have a better idea of how things are going. This Wednesday is picture day -- the first MRI after going on maintenance treatment, so I feel like I have one training wheel off. It's a nervous time, for sure. If things don't go well, this will be our third holiday season with "special perspective." But if this week's outcome is good, it may be my last scan until January, and I can look forward to finishing out 2007 with happier things on my mind.

Monday, November 05, 2007

Ode to "Thy Roid"

There's a new cancer on my mind (besides the one that's literally on my mind): my dad's thyroid cancer. Tomorrow my dad goes in for his thyroidectomy (yep - spelled it with half my brain tied behind my back), and so we are having a farewell party for his thyroid tonight. I'm in charge of bringing the cake and the Operation game.

In preparation for the festivities I also wrote an "Ode to Thy Roid", which I bounced off my mom (my unofficial editor) and she insisted that it belonged on my blog. It reads best if you use your best Shakespearian English accent:

Thy roid --
That bow-tie shaped gland of thine --
The larger gland of the endocrine;
Is annoyed, thy roid –
Makes you hoarse when you whine.

It must go –
Should not loiter
And turn into a goiter.
(Or worse.) Take it out, for it’s ill –
It’s replaced with a pill.

It’s a pain in the neck,
But oh, what the heck –
With the slash of a knife, thy roid--
Thy bow-tied foe—
Must now go.

We weep not for thy roid,
With its lobes and its isthmus
And its cancerous growth –
Be it gone!
(Before Christmas!)

Thy roid – below thy pharynx,
And surrounding thy larynx --
We bid a hasty farewell to thy roid,
Who in its treachery
Has now become void!

(Ah, well, at least it's better than: "Glioblastoma, pack up and go home-a, before I go into a coma...")

Tuesday, October 30, 2007

Deep Purple

It's been a while since I added a song to my blog soundtrack, but I have a new one to add. It's been running through (what's left of) my mind tonight, as soon as my son and I emerged victorious from our belt tests. We have reached the purple belt rank, which means a lot of fun things:

1. We've jumped from beginner levels to an intermediate level, so it's a milestone to be proud of;
2. At purple rank we also begin wearing a black uniform, so I won't see the Sta-Puff Marshmallow Ninja in the mirror anymore!
3. It's the ultimate neuro test (memory, coordination, strength, and balance get challenged) and a marvel that I am doing this long after my statistical expiration date;
4. It was another fun mother/son bonding moment, achieving this goal together; and
5. It's a nod to my Donny Osmond fan club days, when I was ten years old and wore purple socks and had my bedroom decorated with purple flowers.

Put together purple, Donny Osmond, and my September MRI finding of NEDP (No Evidence of Disease Progression -- or "knee deep"), and it's no wonder that "Deep Purple" is singing in my head:

When the deep purple falls
Over sleepy garden walls
And the stars begin to twinkle in the sky
In the mist of a memory you wander back to me
Breathing my name with a sigh

In the still of the night once again I hold you tight
Though you're gone
Your love lives on when moonlight beams
And as long as my heart will beat
Sweet lovers we'll always meet
Here in my deep purple dreams

Friday, October 26, 2007

It's all relative

As I exited the neuro-oncology office last week I got a phone call from my dad. He had a test of his own: a biopsy on a thyroid nodule. His test didn't go as well as my neuro test; now he has a new reason to wear his yellow LIVESTRONG bracelet, which he often wore in support of me. He is officially a cancer survivor now, too.

Thyroid cancer (especially papillary carcinoma, which is his diagnosis) is very slow and very treatable. I couldn't help but feel a little jealous on my behalf, and also a little grateful on his behalf, that his diagnosis and prognosis are much less devastating than glioblastoma multiforme.

However, everything is relative. From my vantage point, it's an enviable situation in many ways. But from the vantage point of someone hearing "cancer" pronounced upon themselves for the first time, I don't think it matters where it falls on the spectrum of types and grades and stages and prognoses. There is still that feeling of violation, that a little saboteur has been working undetected inside your body. And cancer is something that happens to "someone else". It's hard to swallow (okay, a little thyroid pun there) the concept of "I have cancer."

Dad seems to be taking it in stride, and has even worked his sense of humor into the situation. Last night he was talking about his surgeon -- the big guy who is going to slit his throat. And we joke back about the whole thing being such a pain in the neck.

Dad has also seen the power of prayer on my behalf, and I'm hoping that he will experience it for himself.

(She really did pass her neuro test)

Of course, it's the easy one compared to the MRI that I will have November 14. Neuro tests are just a monthly review of balance, coordination, strength, memory, and concentration. (Kind of like a brain tumor variation of the Jedi trials, or sometimes I feel like I am taking a sobriety test on an episode of COPS.)

I got extra credit for my "Krista Passed Her Neuro Test" song, and for walking on my heels while wearing mules. I confessed having taken a spill on my bicycle the week before, but it doesn't appear to raise concerns that anything major was wrong with my balance and coordination. I'm sure I also got extra credit for not going into a coma when I noticed my account balance (insurance doesn't cover Avastin chemotherapy for brain tumors, and I've been taking it every two weeks for over a year). After getting my gold star I was rewarded with a double shot of Avastin (another $16,000 deeper in the hole, but hey -- I'd rather be digging that hole than laying in one six feet deep).

The fun thing is that (assuming my labwork stays good) my next Avastin infusion is scheduled on Halloween. I know that's a situation ripe for all manner of sick humor, so it will be fun to see what the nurses and other patients will be up to that morning. I'm planning to show up in my scarecrow ("If I only had a brain") costume.

Tuesday, October 16, 2007

Krista Passed Her Neuro Test

Okay, so my neuro test isn't until tomorrow morning, but in the spirit of positive thinking I came up with a song to get me through the routine of spelling "world" backward, counting backward by sevens, remembering three test words given at the beginning of the exam, and doing other stuff that you might see in a sobriety test on "COPS". If all goes well, I get treated to more maintenance chemotherapy, and then it's just four short weeks until nervous MRI day!

(to the tune of "Old Mac Donald")

Krista passed her neuro test;
Walked a straight line, touched her nose
Showed her eyes can follow you

With a one hundred,
Eighty-six, seventy-nine,
Seventy-two, sixty-five (...58,51,44,37,30,23,16,9,2)

With a tongue that's straight
And she wasn't late;
Remembered all three test words:
Monkey, tree, and avocado

Krista passed her neuro test;
I.V. chemo...go!

Sunday, October 14, 2007

...and TWENTY-TWO!!!

Actually, it's been twenty-two months and two days since my skull was cracked open and I heard that awful word: malignant. Twenty-two months filled with scary stuff here and there, but saturated with miracles and wonders and lots of love.

The number 22 reminds me of when we started getting into our thirties, and I used to joke with my husband about my age, playfully insisting that I was only twenty-two. Well, using Lance Armstrong's viewpoint that his cancer diagnosis date was the day he "started living", I really am twenty-two again (at least in months).

We didn't make a big hoopla over that, because were having too much fun celebrating my husband's birthday this past week. He is not twenty-two. He is forty-one--an age I hope to see myself next year. Our other joke together relates to the nine-month difference between our ages. He maintains that we are virtually the same age, whereas I like to tease him about being much older.

Last year I bought him a 1967 Ford Mustang for his 40th birthday (and also because I could finally drive again, so we had a need for two cars again). We call it "Mustang Krista" because the car and I are both 1967 models. I wanted him to know that even though he was a 1966 model, it was close enough to show him that things his age were still cool and sexy.

That was the closest I ever came to conceding that we were the "same age". But I was quick to amend and explain that while he and the car might be the same age, the car was built earlier in the year than I was, so I still assert myself as being substantially younger. In fact, this year I teased my husband by drawing a timeline with two major periods: "B.C." = Before the Car was built (infinite period preceding and including Spring 1967); and "A.D." = After car was Done being built (Summer 1967 and infinite period thereafter). I pointed out that he was born in the B.C. era, which also included things like "history", "dinosaurs", "ice age", "the Creation", "Old Testament", and "women not voting". By stark contrast, I was born in the A.D. era, which included "space shuttle", "Sesame Street", "the future", "Internet", "science", and "satellite television". We were born in two completely different universes of time!

We had a good laugh, and then I hit him with a zinger: he must obviously be substantially older than I am, because women are often attracted to older men, and he was the ONLY man who attracts my attention and affection. (He had no good comeback for that one, so even with half my brain tied behind my back for twenty-two months I won that round!)

Whether only slightly so or significantly so, I'm still a little jealous of anyone who is older than I am. Clicking up another year on the odometer of life is something I hope to do myself again...and again...and hopefully many times again.

I should also mention that the State of Texas threw a fine celebration for us. (It was actually the State Fair, but we went to it on Saturday and pretended it was a birthday celebration for a 41-year-old cool and sexy guy, and his substantially younger wife who was born 40 years ago but started living 22 months ago). We even rode the 212-foot tall Texas Star (the tallest Ferris wheel in North America), and despite my prior crippling fear of heights, it was actually a fun ride. We piled into the same gondola together with our two kids, and while my husband kept his death grip on our daughter to keep her from bouncing around and falling out, my son held my hand "so I wouldn't get scared."

I wasn't scared. After all, I've faced scarier things in the past 22 months, and once again I had my family (loved ones much older and much younger) riding it out with me.

Tuesday, October 09, 2007

Everyone should try this

I have enjoyed two inspiring weekends centered around general conference messages by the leaders of our church. I was impressed by all of it, but an admonition from Julie B. Beck (who is the General President of our women's organization, the Relief Society) kept resurfacing in (what's left of) my mind. She said:

"We also have the opportunity to assist the Lord by providing relief for others, which is the greatest, fastest solution to loneliness and hopelessness and a sure way to obtain the companionship of the Spirit. All we need to do to start offering relief is get on our knees and ask, 'Who needs my help?'"

It reminded me of a quote by former church president Spencer W. Kimball, who said, "God does notice us, and he watches over us. But it is usually through another person that he meets our needs."

I remembered Sister Beck's admonition yesterday after my morning prayers, so it became a "p.s." kind of thing: "Who needs my help?" And within minutes of offering that addendum, the phone rang. It was someone who needed my help. Someone who has recently been diagnosed with the same cancer, and who was put in touch with me through a mutual friend. We just chatted for a while, but I remembered how much I appreciated talking with "experienced" people when I was in that time of life, and I hoped that our conversation was providing some relief.

Generous gratitude was expressed at the conclusion of our phone call. But of course, when I hung up the phone I felt happier myself, having found a new friend and another good use for earlier pains. I wondered if maybe I was the person who needed and received help that day. There was another addendum to my morning prayer -- one of gratitude for the counsel of inspired leaders, and for such a quick response to that simple question, "Who needs my help?".

Everyone should try this -- it works! Maybe the phone won't always ring right away. Maybe the "who" is someone under our own noses (in our families or at work or school) instead of a new person crossing our path. Maybe the help is small and simple enough to seem inconsequential in our view (although a lot of great things happen through the small and simple). I am sure that we will always find opportunities to meet the needs of others (and even help ourselves as a natural consequence) if we prayerfully seek those opportunities.

Monday, October 08, 2007

My fight song

Yes, I have a cell phone, and yes, I have a brain tumor. My neurosurgeon said that the rate of newly diagnosed brain tumors does not correlate with the steep rise in cordless and wireless phone usage over the past two decades, so he didn't advise getting rid of my phone. (Which is good, because my family members would rather not have to wait for me to drive home before I can share MRI results.)

Over the weekend my husband helped me find a new ringtone for my cell phone, because the default one was pretty annoying. My phone is now rigged to pay Lionel Richie's "Hello" (our song) when my husband calls. (I know--awwww.)

When anyone else calls, it plays the BYU fight song, which takes me back to my college days, shivering in the stadium but having fun at the football games. The unfortunate thing about this ringtone, however, is that it only plays the BYU fight song as far as the upbeat leading to the chorus, which is an awful place to cut off the song (but at least that way I won't miss as many calls while I'm mentally shaking pom-poms).

There's nothing like having a song cut off at a good spot, to permanently set that song playing over and over in my head. So I figured, hey -- if it's going to play in my head all day, I may as well make up my own words for a personal "fight" song, to cheer on the healthy parts of my body:


Rise immune system, and hurl your challenge to the foe.
You will fight, day or night, rain or snow.
Loyal, strong, and true
Do what you must do.
While we sing, get set to spring.
Defeat the tumor, it's up to you.

OH -
(this is where the cell phone stops playing, but my mind keeps going...)

Rise and shout, the tumor's knocked out
We're on the the way to re-co-ver-y.
Rise and shout, our cheers will ring out
As we unfold a victr'y story.

On we go to vanquish the foe, so I can raise my son and daughter.
As we join in song, in praise of God, our faith is strong,
We'll raise our voices high in refrain,
And cheer what's healthy inside my brain!!!


Yaaaaaaaaaaaaaaaaaaaaaaaaaaay, healthy glial cells!!!!!!!!

Sunday, September 23, 2007

The Danger Zone

What you are about to read is not a complaint about my recent good news!

On Friday night some friends joined us for "family friendly" karaoke night at a local restaurant. It was so nice to spend some time at the microphone, singing love songs despite having a big hole in my right brain (where music is generally processed). I reflected back on my three Messiah performances since my head was carved (and a fourth performance is planned for December 16), and felt very blessed.

I also found myself marveling on Saturday morning as I participated in a two-hour special karate lesson taught by Master Black, a seventh-degree black belt who was in town to celebrate our dojo's 25th birthday. I learned to fend off grappling, knife attacks, and all kinds of punches and kicks, and couldn't help but consider it symbolic of the way my brain and body have withstood the onslaughts of cancer and cancer treatments (so far, at least). I realized that I was literally "alive and kicking", and it was miraculous.

On Saturday evening my husband and I caught a few minutes of the "edited-for-television" broadcast of the movie, Saving Private Ryan. We hadn't seen it before, but my grandmother told me that my grandfather served in that same company portrayed in the movie, so I was happy to find a non-R-rated version. Even so, it was still intense and violent and frightening during the few moments that we saw, and I couldn't help but try to imagine how anyone (and thankfully how my grandfather) managed to survive such a nightmarish experience, storming the beaches on D-day. This is the same grandfather who later died of cancer, but he lived seven years after being given a six-month prognosis. More than once, he had to survive against the odds, and I guess I've been lucky to follow suit (so far).

It's been a good week. However, I also noticed this week that I face a new danger: the danger of good news.

I should repeat that this is not a complaint. I really like having good news! I feel like Ralphie in the movie, A Christmas Story, when his mom covers for him so that his dad won't punish him, and he says, "I slowly realized that I was not about to be destroyed!" That quote keeps going through what's left of my mind ever since the MRI results came out good.

I know that the battle isn't over (I still need the prayers, thank you thank you thank you!!!). And I know that there are no guarantees for anyone's longevity. But the "death may be imminent" pressure has subsided a little bit -- kind of like the piano hanging over my head getting a nice, new cable reinforcement. It's good in a lot of ways, but I realized that I need to be careful about this new danger.

When adversity strikes, it comes rich with opportunity. There is greater clarity in a once-complicated life, and there is greater appreciation for things that were taken for granted. Faith grows stronger, love grows deeper, and blessings are easier to find. Of course, we'd be much better off if we could seize these opportunities without waiting for adversity to leave them at our feet. And when we get a season of joy and relief, we'd be much better off if we could retain the valuable perspectives from times of hardship. Otherwise we drift into the danger zone, where we lose what we learned.

Just a few days ago I caught myself getting impatient over things that were very trivial and stupid--things that wouldn't be worthy of my notice even a week ago. I realized how easy it is to let the good times roll...into the danger zone.

Added to Ralphie's "not about to be destroyed" voice in my head is the voice of the prophet Alma: "Yea, he that truly humbleth himself, and repenteth of his sins, and endureth to the end, the same shall be blessed--yea, much more blessed than they who are compelled to be humble..." (Alma 32:15)

I'd rather not "be compelled". I'd rather figure out how to keep all the benefits of my cancer journey without having to forfeit this season of joy. I've had the chance to learn much about enduring difficult times; now my challenge is learning how to endure good times without becoming complacent.

(Hopefully I'll just have to keep getting good news, so that I can practice!)

Tuesday, September 18, 2007


(Carboplatin, that is!)

MRI results were great! My doctor is very pleased, and she decided that I could stop taking Carboplatin. However, rather than going cold turkey with the chemotherapy altogether, she is leaving me on Avastin for six more months, and then if things stay good she will let that treatment go, too.

I'm naturally very relieved and grateful that things went this well, and I appreciate the prayers that not only helped bring about this result, but also helped me be calm and unafraid.

This opens up a new world for me in some ways. On the good side, I don't have to worry about my white blood cells crashing anymore (the Carboplatin did that). But I do have to keep monitoring my platelet levels and kidney function, and I have to be on guard for stroke (which has happened to patients). I'm also allergic to Avastin, so I'll still be taking a lot of Benadryl on treatment weeks.

My infusion and monitoring schedules will remain the same (labwork every week, Avastin infusion every two weeks, neuro test every four weeks, and MRI every eight weeks), but instead of alternating short and long infusions I will have the same 45-minute infusion each time.

The next MRI will be a nervous one, because it will be the first one following the switch to "maintenance". But, hey -- it's better than dealing with tumor progression and waiting to see whether it responds to treatment. And we have a game plan: if the next MRI has any funny business on it, they may just add Carboplatin or another drug back into my treatment.

Meanwhile, I get to celebrate that I'm not only alive longer than predicted, but my brain also looks better than it did a year ago.

Sunday, September 16, 2007

Pivot Point

I remember more than nineteen years ago, being unable to sleep the night before my wedding. Part of the reason was that I spent that night in a hotel with my family, and my younger brothers stayed up late watching Beetlejuice on television in our room. But the main reason was anticipation, knowing that the next day's event would change my life in a big way.

Tonight may be another sleepless night. Insomnia is hardly a novelty for me, but once again there is that anticipation, knowing that things will soon change for me in a big way. At least with my wedding I already knew that life was changing in a good way. This time things could go either way. The next couple of days will be highly pivotal for me as I reach the end of my current treatment protocol.

I leave early tomorrow morning for yet another trip through the MRI tube. This is followed by a merciless wait until Tuesday morning, which is the earliest my doctor is available to read the MRI results and deliver the verdict. I will either be NEDP (no evidence of disease progression) for twelve consecutive treatment cycles, which would mean great things for me (including a reduction or possibly even a suspension of treatment). Or I could have a new battle on my hands. Either way, it will be significant.

Naturally, I can't help but look for clues that might tell me how my cranium might be doing. It's like I was many years ago, undergoing infertility treatments, and being obsessed with signs of pregnancy (as if there are any noticeable signs three hours after conception). Yesterday my husband caught me making faces in the mirror as I tried to confirm facial symmetry. I managed to teach my Relief Society lesson today in church, and I even sang the hymns from memory (both positive signs of neuro function), but I couldn't find the music I needed to direct choir practice, and I had the usual "where are my shoes?????????????" moment.

(I think my husband is going to put "She went to find her shoes" on my headstone. I have many proud Brain Tumor Savant moments of brilliance, but I can't leave the house without my ritual of stomping through it, looking for my shoes. I have a lovely shoe organizer in my huge and disastrously messy closet, but I still run around with two mismatched shoes, saying, "I know there's another pair just like this somewhere, ha ha!")

The truth is that I'm completely useless in giving myself clinical indications of how my head will look on the inside. I'm too much like my whole-brained, quadragenarian peers and fellow parents of young kids. We have our good days and then we have our bad days where we're looking for shoes so our kid Whatshisname can get to school on time. Plus I had no symptoms last year when the MRI picked up tumor progression. I'm just going to have to wait and be patient until I get the real news.

I kept thinking to myself today, "I'm either living or dying." And then I had to correct myself: I'm living AND dying, just like I was from the moment I was born. Just like we all are, regardless of MRI results or lab results or professional opinions. Life is a terminal condition, so all who have life are eventually dying. Meanwhile we are living, and what we do about that -- whether we just sustain a heartbeat or whether we really LIVE -- is a choice, and it is one of the things that we can still control, even when everything else in life seems so out of control.

This situation is out of my hands. Things are what they are, and the MRI will just reveal what already is. I believe that things are probably as they should be -- whatever that means in the Lord's good will and plan for me.

It still may be a sleepless night. It still may be a suspenseful and emotional couple of days. But I am armed with the knowledge of Who is in charge, and with this situation in His hands, everything will ultimately be okay--no matter what the path will look like for the next leg of the journey. And I know that, once again, I will feel the sustaining strength of many prayers on my behalf.

I just need to find and lay out my shoes before I try to go to sleep...

Wednesday, September 12, 2007

...and TWENTY ONE!

It's my birthday again! Twenty-one months since my cancer diagnosis, or as Lance Armstrong would say, since the day I started living again.

I'm far beyond the expected lifespan, and well over the hump toward becoming a long-term survivor (which in this case is defined as three years post-diagnosis).

I spent this morning finishing up an ISO recertification audit, and then my husband and I stopped briefly at our local family history center to process some family history records. Tonight my son and I have a karate lesson. Meanwhile, I think I'll celebrate with a nap. In-between all this, I'm washing my hands and slathering them with sanitizer lotion like an obsessive-compulsive. But it's not bad for having half my brain tied behind my back for 21 months!

Monday, September 10, 2007


It's so much more fun to give glowing reports of happy news, and I've been lucky to have lots to share. But let's face it - cancer sometimes has its bad news moments.

My blood cell counts have crashed. I don't know all the details, but I'm neutropenic (very low white cells - very vulnerable to infection) and the other stuff is "pretty low". I was in an audit all day and so the nurse relayed the message to my husband, who did his best to capture the salient points without knowing all the detailed questions I would normally ask.

It's almost like my body kept hearing me brag about how I'm at the end of a twelve-cycle treatment regimen, and said, "Wow - I've had THAT much chemotherapy?? I guess I should be sick by now!" I wouldn't be surprised at all if I suddenly woke up bald, if my body lets my hair in on the secret.

These lab results were from a blood draw on Friday. Since Friday I've eaten lots of raw fruits and veggies, and I've shaken many hands. I spent most of Friday night and Saturday morning in our filthy garage, getting ready for our neighborhood garage sale and getting lots of bruises (thanks to low platelets) and exposure to unimaginable germs. Who knows what I could possibly be incubating at this moment. Sleep deprivation and a busy/stressful week do not help, either.

(Quick -- tell me a joke, because laughter boosts the immune system!)

I'm hopeful that next week's MRI scan will be good, so that treatment won't be necessary. If that's the case, then I just need to be the bubble girl and avoid surviving glioblastoma by dying of a freak infection.

It's a prayer moment!

Sunday, September 02, 2007


Today I was called, sustained, and set apart to be a teacher in our Relief Society organization (the women's organization in our church). I teach a thirty-minute lesson every third Sunday, starting this month.

I was thrilled to get this calling for many reasons, but especially because it requires me to be alive and functioning! They don't need me to be the choir director for the Second Coming -- at least not yet! (Those who have read my earliest posts know that my niece's theory was that if I died, maybe it was so I could be the choir director for the Second Coming!) I'm glad that my last calling wasn't my LAST calling, and that I can still serve a useful purpose here upon the earth.

I am looking forward to teaching the sisters in my ward. For one thing, I already know firsthand that they are a very charitable group of women, so it makes me feel less nervous as I prepare my first lesson. Also, it will be nice to spend more time giving back something to these women, who rendered so much service to me when I needed it.

This new opportunity is great but also somewhat bittersweet, as the plan is to eventually release me from my calling as the Primary music director after the children do their fall program. Singing with the Primary children is part of my music therapy. I have had many Maria Von Trapp moments working with them, and will miss them dearly. ("So long, farewell, auf wiedersehen, good-bye...")

Change can be hard to adjust to, especially when basking in a comfort zone. It's hard to end a good chapter. The good news is that when we end a chapter, we start a new one, and it can be full of wonderful things. And even when we have to put our pencils down and end the whole story of our lives there is the post-life epilogue.

I'm glad that I will still get to see the Primary children sing, and maybe I'll get a chance to substitute on occasion for the new director. I still have my callings as the ward choir director and music chair, so I still get some good music therapy. (And we're starting to work on Christmas music already!) And I am really looking forward to this new teaching opportunity, because I came to appreciate long ago that the teacher is the one who learns the most.

Friday, August 31, 2007

Cleared for landing?

Lab results this week = good! ANC (absolute neutrophyl count) is on the low end of good, so I still need to be careful around germs, but everything was good enough to proceed with next week's chemotherapy infusion.

It might be my last one. At least I know it's the last one for this treatment protocol. I feel very fortunate to have gone twelve cycles - as planned - without having any problems that would delay or change treatment.

The end of this cycle will be pivotal, as we see how the MRI looks on September 18, and decide where to go from there.

Wednesday, August 22, 2007

Starting Cycle 12

Labwork this week = excellent! I remain the walking miracle. I aced the neuro test, too. (Memory words today were butterfly, apple, and baseball.)

I was cleared for my long chemo infusion today. This is the start of cycle 12, the last four weeks of the treatment protocol that I began last October, when tumor progression was noted. The treatment has been very successful (miracles all around). In two weeks I have a short chemo infusion, and at the end of this four week cycle I will have another MRI, which will be a turning point. It will either have bad news, which will cause us to re-evaluate our approach, or it will have good news (like it has each time since I started this new treatment). If the latter is the result, my oncologist and I will be discussing whether to go on a maintenance treatment regimen (involving less chemotherapy), or whether I can take a break altogether from treatments and just undergo monitoring. It would be the closest thing to the "r" word (remission) that is possible in this kind of cancer. It would be an awesome thing. There will be a huge call for prayers as we lead up to that pivotal moment!

...and Nineteen!

No, I haven't had a setback! I'm still celebrating 20 months of A.D. life and doing well (scored over 400 points in Scrabble against a whole-brained person). This "nineteen" refers to nineteen years of wedded bliss! It was an anniversary that I didn't think I'd be able to see when I was initially diagnosed, but people told me to ignore the statistics, and they were right. My mom said that if I hang in there for our twentieth wedding anniversary she wants to send us to Hawaii.

Our nineteenth wedding anniversary was on Monday, but in typical fashion we made it a long celebration. On Saturday Prince Jared spent the entire day cleaning our bedroom, which was really nice! I walked in and wondered if he had built a bigger room!

On Sunday we had an anniversary-themed dinner with my dad and stepmom. I decorated the dining room with my wedding gown and temple dress and pictures and flowers and stuff. We put a small television in the room and played our wedding video during the dinner. It's always so fun to see that happy young couple at a time when we figured we had just made it to Happily-Ever-After, and we had no idea what challenges we would face together. Luckily we've weathered all the storms of our life so far by clinging together. It's always nice to be married to your best friend.

We had a family night/double-date night with the kids Monday evening, and saw Hairspray at a dinner theater place. I thought one of the songs was especially appropriate for our anniversary state of mind:

You're Timeless To Me
(just some snippets of it, at least!)

You're like a stinky old cheese, babe
Just gettin' riper with age
You're like a fatal disease, babe
But there's no cure
So let this fever rage

Some folks can't stand it
Say time is a bandit
But i take the opposite view
Cause when i need a lift
Time brings a gift
Another day with you

A twist or a waltz
It's all the same schmaltz
With just a change in the scenery
You'll never be old hat
That's that!
You're timeless to me

You're like a rare vintage ripple
A vintage they'll never forget
So pour me a teeny virgin triple
And we can toast the fact we ain't dead yet!

I can't stop eating
Your hairline's receding
Soon there'll be nothing at all
So, you'll wear a wig
While i roast a pig
Hey! Pass that Geritol

You're like a broken down Chevy
All you need is a fresh coat of paint

And you got me goin' hot and heavy
You're fat and old, but baby, boring you ain't!

Some folks don't get it
But we never fret it
'Cause we know that time is our friend
It's plain to see
That you're stuck with me
Until the bitter end...

You'll always hit the spot
Big shot!
You're timeless to me

You'll always be du jour
Mon amour
You're timeless to me

You'll always be first string
You're timeless to me

It's been a while since I added a song to my blog soundtrack, and I thought this one was pretty cute!

On Tuesday my dad and stepmom watched the kids, so we could go to the temple and out to dinner. At the temple we did proxy sealings, which is a nice way to relive our own marriage sealing in the Salt Lake Temple. The ceremony is almost similar, so we make it a tradition to go and do that every year. It's kind of like our own way of renewing our vows and being reminded of the blessings that are pronounced upon a couple who is sealed for time and all eternity. It's nice to really be "timeless" to each other.

After the temple we headed off to our anniversary dinner spot, which is Randy's Steakhouse in Frisco. We discovered this place ten years ago, and have gone there for our anniversary every year since. It is a very romantic setting in a restored historical home, with a piano bar and more dining rooms added on throughout the years. Randy himself cuts each steak before it is cooked, and then he strolls through the restaurant, making friends with the customers as they dine. He congratulated us heartily and treated us to lemon chiffon cake. We had our typical fabulous super-tender 8 oz filet, and we reminisced about the many changes that have taken place over the past ten years since we had our first dinner there.

Back then we had two beagles and no kids, we lived in the third of five homes we have had since moving to our town nearly twelve years ago, and we worked for different companies than we do now. My parents had just divorced, and we thought that was the worst thing that would ever happen to us. The extent of our infertility, miscarriage, and adoption adventures were yet unknown at that time. Cancer was something that only happened to other, older people, as far as we were concerned.

Life has turned out very differently than it looked back then. In some ways it was bad, in other ways it was good, but through both good and bad we have been blessed. John Lennon was right: "Life is what happens to you while you're busy making other plans."

As it turned out, my parents' divorce caused us to reinforce and fortify our still-happy marriage. This prepared us for the onslaught of infertility, which usually attacks all the vital parts of a marriage. We emerged from heartbreaking experiences stronger instead of broken. We learned that our greatest blessings came in unexpected packages, and that thorny ways did lead to joyful ends.

That experience taught us to trust completely in the Lord, because his thoughts and ways are higher than our ways, and if we let him be in charge of the blessings and how they come about, they end up being a lot better than what we could come up with on our own. From a practical standpoint, it also taught us important medical information, so we were being prepared both spiritually and physically for our next adventure: cancer. Who knows what is next, but we know that whatever it is, we will be prepared.

Luckily many more surprises were fun. Stuff we never expected, but love, include:
- the house we live in today
- the huge expansion of the area between our house and Randy's Steakhouse, with loads of shopping and fun things to do
- adopting two kids, including one of a different race who fits right in
- spending time together on Capitol Hill, lobbying for adoption tax credits
- new karate belts
- resurrected clogging duets
- becoming a chief executive, then retired, and later self-employed
- becoming an author
- becoming part of the Mary Kay family
- Messiah duets
- teaching voice lessons
- reuniting with friends and family
- discovering a passion for genealogy work and learning cool stuff about my ancestry
- being alive long after my expiration date, and keeping my quality of life

and on and on and on!

It's been a good ten years since our first dinner at Randy's. It's been a good nearly quarter of a century since our first date. It's been a great nineteen-year "permanent date" since the day we were married. Very different than expected, but nevertheless very blessed, with much to look forward to.

Sunday, August 12, 2007

...and TWENTY!!!

Yep, I'm at the 20-month mark today!

This was an important milestone for me (actually, each day that I am still drawing breath is an important milestone, but...) because I was told that most glioblastoma multiforme studies show a break point among the treatment groups at 20-24 months after diagnosis where the curve flattens out and there are very few or no further tumor recurrences or deaths. It doesn't mean that I am cured (still need prayers), but it is certainly an encouraging sign.

This "birthday" weekend was another reunion of sorts. We traveled down to The Woodlands, just north of Houston, where we lived for a few years before coming to the Dallas area. We stayed with my mom, and we attended church with her to see one of our friends' sons report on his two-year mission, which he served in Canada. I remember when he was a preschooler, and it was so fun to see him all grown up and doing so well. My friend had the typical and well-deserved "returned-missionary-mom" glow, and I couldn't help but hope that I would stick around to experience the moment when my son returns from his mission. That would be fifteen years from now, which seems like a long shot, but I remember when 20 months seemed like a long shot.

I also got to spend time with another friend, who came in from California for the same event. I saw her daughter, who recently graduated from college and is starting her master's degree program soon. I thought of my own daughter, who just turned two, and hoped that seeing these milestones among my friends' kids would end up being symbolic of what my own milestone today might portend. (If not, I'll just have to haunt my kids when they have special events!)

To celebrate this milestone I have added a feature on this blog site to help support some very relevant research that is being done to find a cure for my cancer. There are two specific funds that are worth supporting. One is Dr. Samuel Hassenbusch's fund at MD Anderson. Dr. Hassenbusch is a GBM survivor who has a vaccine treatment that is very promising. The other is Dr. Karen Fink's fund at Baylor Medical Center. Dr. Fink is my neuro-oncologist, and is very involved in research. In fact, the experimental protocol she is using on me has kept me alive and well in order to celebrate today's milestone. Please check out the links to the left for donation forms and instructions. Dr. Hassenbusch's form is pretty self-explanatory with mailing instructions; Dr. Fink's form doesn't have the mailing address printed on it, so scroll all the way down on the left of this page, past the archives list, to find out where to send it. They will send you tax receipts, and the donations go directly toward research that may very well be the answer to our prayers for my life. Any and all would be very much appreciated!

Monday, August 06, 2007

Orange is the new black?

Nah -- it's just another step closer to black! (In karate, at least!)

My son and I had our belt tests today, and are now sporting orange belts! It's not only fun for us to do this together, but it's the ultimate neuro test, challenging memory, balance, coordination, and strength. Like clog dancing, it's life-affirming and reassuring and good for body and mind. There was a time when it looked like I wouldn't see this day, let alone be of sound mind and body, so it's more than just a new belt and certificate to celebrate.

We have our sights on purple now, which is especially exciting for me because I stopped at the orange belt level twenty years ago. So this is new territory for me now that I am older and bigger with less of a brain. Plus at the purple belt level we switch our uniforms from white to a more flattering black (no more Sta-puff Marshmallow Ninja), which is the biggest motivator of all!

So let's the last 30 days I managed to pass my MRI test, my neuro test, my blood tests, and my belt test. This is a good trend...hope it continues!

Friday, August 03, 2007

Good labs!

One step closer to reaching a good milestone! My labwork came back good this time, so I am cleared for my chemo infusion next week!

So far (knock wood) I have been able to follow the protocol we started last October with no interruptions in treatment. There have been some times when we came close to having to suspend treatment, but I always bounced back just in time. It's a prayer thing. As a friend of mine said about her husband's good news, "Miracle Accepted"!

Just a few more weeks (almost 7 to be exact), and if all goes well I might be able to transition from "recurrent tumor" to "successful treatment protocol; no evidence of disease progression; recommended for maintenance and/or monitoring."

Huzzah! (Thanks, and keep the prayers coming!)

Tuesday, July 31, 2007

In a weak moment I have written a book...

"In a weak moment I have written a book..." - Margaret Mitchell

This has become one of my favorite understatements.

I beat the odds and survived long enough to turn forty last week, and we celebrated with a family trip to Georgia. Being a superfan of Gone With the Wind I wanted to go to Atlanta to visit the land of Tara, and "The Dump" -- the apartment where Margaret Mitchell wrote the book. She was almost a quadragenarian when it was published. She didn't have a brain tumor, so she took ten years to write it while convalescing from an injury.

It was fascinating to learn more about the life of Margaret Mitchell, and the process of writing and publishing Gone With the Wind. Not only because it is my favorite novel, but also because I could relate to being in a weak moment of recuperation and writing a book. In fact, we also visited the Liahona Bookstore in Atlanta, where copies of my book were being sold, and I signed some copies and chatted with the management and staff to thank them for carrying it.

We also visited Jonesboro, to visit the Road To Tara Museum, and to dig up some of the "red earth of Tara", which gave Scarlett O'Hara her strength.

We stayed in Macon, Georgia, at the historic 1842 Inn, an antebellum home that avoided being destroyed by Sherman's troops during the Civil War. (It also avoided being destroyed by my two children, thank goodness!)

We chose Macon, because my brother Jim has just started a Moh's surgery fellowship there. It was nice to see Jim and thank him for being part of the reason I was able to have a 40th birthday. Without his insistence that I was having seizures, I would have been left to rely on the ER doctor's advice that my symptoms were probably just something weird that would go away by itself in six months (that advice would have killed me). Jim also let me cream him in a game of Scrabble.

We had more time on the road again as a family, more use of the spray bottle, and more whinnying when we saw a Ford Mustang driving down the road. The coolest surprise on the trip was my son's high interest in the movie, Gone With the Wind, and his insistence that we watch it together on the little portable DVD player.

Now that I am forty and still alive, the next question is my next book. I have entertained some ideas, but just like in my B.C. days my family and my work have taken most of my time, and the other stuff of life easily takes the rest of it. And I'm not on as many steroids, so I'm not up writing at 5:30 am like I was in my post-op days! I have to keep Ms. Mitchell's quote handy as a reminder that I should not wait for my next "weak moment" to write another book. And I shouldn't wait ten years. Even though things are looking as good as they can for me right now, I should keep the cancer glasses in place, to motivate me to do things while I still can.

After all...tomorrow IS another day, but we don't know what it will bring, except perhaps a string of yesterdays full of "oh, darn -- I should have________".

Monday, July 23, 2007


quadragenarian: (n) a person between the ages of 40 and 49; not commonly found among GBM patients who were diagnosed in their thirties.

Today's MRI scan looked "beautiful", in sharp contrast to my roots that need serious touching up (Carlos has been booked solid). But hey -- at least I have hair! And the little gray straggles remind me that I will likely reach quadragenarian status on Wednesday (assuming I make it home safely in traffic)! We'll have an early celebration tonight.

Saturday, July 21, 2007

Lab results

This was the first chemo cycle in a while that didn't have bad labs to keep me in suspense over my treatment schedule. Upon my return from our Utah trip I headed for the lab to see if I am healthy enough to get my chemotherapy on Monday (assuming the MRI keeps showing that the chemo is working). I went in on Wednesday and then nervously awaited the phone call on Thursday to get my results...and then when I didn't hear anything I figured no news might be good news.

On Friday I finally got the call. White blood cell count was great. Neutrophils were great. Platelets were great. Clinical chemistry panel was "perfect". Who'd have thunk I'd been shooting up cytotoxic chemicals for the past nine months?

My other family members have been dealing with colds, allergies, migraines, heart disease, stitches, and all kinds of stuff. Except for -- well, you know -- the catastrophic grade IV brain tumor (which didn't even show up on the last MRI), I'm the only one who feels healthy. After 19 months of cancer treatment, I still have more hair and energy than my husband!

Thursday, July 19, 2007

...and NINETEEN!

I's actually 19 months and one week!

(Since my diagnosis, not since my last blog post!)

I've been a tardy poster (again) because I've been a busy girl!

I spent my 19 month milestone at a wonderful family reunion in Utah. Our trip was a reunion in lots of fun ways.

First of all, there is nothing like bonding with my husband and kids on a 20-hour road trip from Texas to Utah. We saw beautiful scenery going through western Texas, into New Mexico, and through western Colorado and eastern Utah. We spent a little time on historic Route 66 and stayed overnight at the historic and kitchy El Rancho Hotel in Gallup, NM. We learned the value of a spray bottle of water for resolving sibling disputes in the back seat (much more amusing and nicer than yelling at the kids). We enjoyed seeing our son get so excited as we passed by beautiful rock formations and arches, and playing the game of whinnying anytime we spotted a Ford Mustang (my husband's favorite car). We were also pleasantly surprised at our daughter's decision to be potty trained on the trip. (That was easy!)

The official reunion was for my paternal side of the family. I hadn't been to one for a long time, and since they are only held every couple of years I certainly didn't want to miss this one. My paternal grandparents are deceased, but we were fortunate to be surrounded by their brothers and sisters, my dad's brothers and sisters, and cousins galore (and their kids). We had so much fun being among a huge crowd of people who loved each other and shared so many memories together. Some of us commented about how that must be what heaven will be like.

A side benefit was the opportunity for a mini-reunion with some of my husband's family. We stayed with his parents, and we were able to see his two sisters, who live with their families in Utah. One of his brothers came in from Michigan, and one came in from Nevada, so we had more opportunities to feel the love.

I had a brief lunch reunion and book signing with support group members while I was there, and before we knew it we were off again for the ride home. As always, these trips are never long enough, especially since I would have loved another gaggle reunion or a Cloggers West reunion or a myriad of other opportunities while we were in Utah.

Our trip home was delayed by another "trip" -- this time it was my son landing face first on the only part of his grandma's sofa that wasn't soft. I had to hold his hand and try to comfort him as the ER doctor put three stitches into his upper lip. He was hurting and terrified, but he was a brave little guy, and he was happy to go home with his glove "balloon" and a new teddy bear and truck (thanks to some kind folks who donated gifts for pediatric emergency patients).

The delay meant getting home safe and sound but very late, so it was nice to be snug in our own beds again. And we think the stitches have finally cured my son of his thumb-sucking habit. All is well.

My next adventure is a trip through the MRI tube this coming Monday. I am once again at another fateful nine-month point (more than nine months since my last recurrence was confirmed) and I am once again leaning on prayers and hoping for miracles. After all, I've made it this far!

Tuesday, July 03, 2007


Dad's surgery went well -- a very "boring" quadruple bypass, according to his surgeon. Not surprisingly, of course, because once again our family has been sustained by faith and prayer.

Plus...hey, it was a NO-BRAINER!!

Sunday, July 01, 2007

The Wizard of Oz

It's funny how sometimes things fall together around a common theme. It's nice, because I'm always searching for themes for birthday parties and Halloween and stuff like that, usually many months before the event.

It looks like this year we should have a Wizard of Oz-themed Halloween. We loved the stage show, Wicked, which is a prequel to The Wizard of Oz. My son even likes to sing songs from it every now and then. A few weeks ago I found some red glittery shoes for my daughter on sale, along with a t-shirt ideal for my little-league star son: it had baseball graphics on it, with the slogan, "There's No Place Like Home." And we don't live in Kansas, but it's that time of year when we have exciting weather in Texas. So it's been on our minds.

Speaking of minds, I figured that I would be the scarecrow: "If I only had a brain" (at least a cancer-free one).

Our prayers have recently turned to my dad, who is having heart surgery this week. Unlike his daughter (the professional patient) my dad has never been hospitalized before, so it's a doozy of an adjustment. I'm hoping that he will feel the same strength and comfort that has carried me through my ordeals, which emanates from the faith and prayers of many.

Dad's situation is sobering, but since I have learned to instinctively extract something light out of heavy situations, it occurred to me that we now have a tin man for our ensemble: "If I only had a heart" (He has a real heart in the good sense, but anatomically speaking, he'd like a disease-free one).

We can't double up our parts, so we have to summon our own courage (which again, is fueled by faith and prayers). The part of the Cowardly Lion remains to be cast. Once in a while we torment my youngest brother, a very eligible bachelor of twenty-six, teasing him about how Brigham Young once declared that an unmarried man of that age was a "menace to society". The reality, of course, is that all good things will happen in their right time and way (as I learned during the long wait for my children). My brother is a good sport, so maybe he'll indulge us and be the guy in the lion costume wishing, "If I only had the nerve" (as well as the right woman in his universe).

The nice thing is that we don't need to traipse down a yellow brick road in search of a fake wizard. Instead, we walk by faith down the paths of life, knowing that Someone very real knows our needs and provides amply. We walk arm in arm with loving family and friends who are always there to support us and help us.

Tuesday, June 26, 2007

Hello from Chemo Land

This is an historic moment...the first time I have blogged while hooked up to an I.V.

The "walking miracle" (my mom's pet name for me) is now sitting in a recliner, receiving ALL of the scheduled chemotherapy, thanks to a full rebound of my white blood cells and platelets. I'm no longer between a rock and a rock, because one of the rocks was moved. (Not a surprise; faith can move mountains, so it can remove a silly obstacle like damaged bone marrow.)

I also managed to dodge my daughter's high fever and virus last week, so that I could remain infection-free. Something hit me pretty hard on Sunday with a cough and terrible sore throat, but it's gone now. The whole path was cleared to make it easy for me to come in and sail through my neuro tests (the three words today were baseball, giraffe, and avocado) and receive my chemo.

I have spent most of the four-hour drip doing work on my laptop, so while I was in the neighborhood I thought I would pop in and give more BIG THANKS for all the faith and prayers that have been offered on my behalf. Once again, it worked!

Wednesday, June 20, 2007

In a box

We're halfway through a good news/bad news week.

My son and I completed our first belt test last Friday and we now sport our fashionable yellow belts (good news). Several days later I am still sore, but it was another fun memory moment, and now I feel like I have a big "Livestrong" bracelet around my waist. The karate test felt like the ultimate neuro test, which was reassuring. My son also feels like he accomplished something big. Now - carefully - we are moving on to the orange level.

Our refrigerator/freezer died this weekend (bad news), but on Monday we found a really nice new one on sale, making it affordable to replace both the appliance and all the food that we had to throw out (good news). And to make it even more fun, we got a new refrigerator/freezer BOX! My kids think our home is Disneyworld now, as they transform the huge box into a play house, a tunnel, a castle -- you name it.

My daughter's second birthday is today. In addition to the BOX, which she probably thinks came in her honor, she has some little boxes and packages of gifts to open later today. That's all good news.

My labwork this week had mixed results. This time my white blood cell count has increased to the "borderline normal" range (good news) but it might simply be my body fighting infection already (wouldn't be so good news). So I still have to be careful to avoid getting sick. And my platelet count is also too low. That's not good news. Now I have different precautions to take to avoid bleeding and bruising (as in, no karate class today - bad news - but more time to spend with our daughter on her birthday - good news). It also means that I need a really big rebound, really fast.

When my white cell count was a little low they would still proceed with the Avastin infusion, and I would only risk missing out on the Carboplatin infusion, which is added every other time. But I always rebounded in time, so I haven't had any interruption of this treatment protocol. It was comforting to know that there was a possibility of at least getting some chemotherapy. However, because Avastin puts me at higher risk for bleeding they will suspend all treatment if my platelet count is too low. This is the "between a rock and a rock" situation again, where I am really feeling boxed in. I feel like I'm in an old western movie, where I've just walked into a saloon and the bar-keep says, "choose yer poison" (infection, brain hemorrhage, or untreated tumor running amok).

I'm going in for more labwork on Friday, in the hopes of getting a better result in time for Tuesday's scheduled infusion.

Meanwhile, the good news is that I have learned much from experience. I have learned from experience that things are not always what they seem. My perspective is pretty boxed-in, because I don't have the advantage of knowing how this story will unfold, and what is planned for me. As I pondered my situation I remembered all the times when I had the rebound I needed, right when I needed it. I remembered all the people who let me know I was in their prayers. I remembered my doctor's comment about maybe someday down the road, wondering how long I would even need Avastin treatment, if my MRI's keep looking like they did last time. (Not that we would want to discontinue it prematurely, but surely things would be more dire if the last scan didn't look so good.)

Things may be just fine. Setbacks don't have to mean that I'm destined for the "final box" (the one they bury six-feet deep) anytime soon. They just call for more caution and prayer. Meanwhile, there are many possibilities that lie beyond the box of our limited understanding, and those possibilities are usually good news.

Wednesday, June 13, 2007

...and EIGHTEEN!

My baby brother Blake turned twenty-six yesterday (June 12). And then today I realized that June 12 also marks the completion of yet another six-month chunk of survival since my cancer diagnosis. As of yesterday I have survived eighteen months with a cancer that has a median survival range of 9-12 months. I am four months past the ominous fourteen-month mark, which represented the "significantly improved" average survival resulting from the temozolomide clinical trial. I am a few months away from reaching the point where the statistical survival curve tends to stop its sharp drop and flattens out for a while. And I am officially halfway to reaching the "long-term GBM survivor" milestone of three years.

I could still get struck by lightning today (it's severe weather season in North Texas). I could still die from infection, with my immune system in the tank. Or I could die of shame if I keep evolving toward a Howard Hughes germophobe lifestyle. Traffic, unchewed food, aneurysm during Friday's belt test -- you name it -- I have no guarantees. Nobody does. That's why today is the "precious present". That's why I could joke with the nurses in the chemo infusion room this morning. That's why being with my family is always so fun. (Even when my daughter loaded her diaper, pulled it off, and said, "I'm stinky!" -- and thank goodness Daddy was able to take care of it. ) That's why this evening's karate class was exhilirating despite an intense workout. ("Just be grateful that you can do this stuff...and thank goodness for dietary supplements and Purell hand sanitizer, because the place looks nice but smells like feet.")

And just because I've managed to hang on this long doesn't mean that I get to shed the sense of urgency to get things done. I still have lots of work to do. I still have things to put in order. Things to teach my kids. I still wake up early with a to-do list racing through what's left of my head. No sense in procrastinating the things that should be done now, because none of us knows what's around the corner for us -- good or bad.

Of course, maybe the to-do list is helping to keep me alive. My brother Jim told me about a man who outlived his prognosis because he was in the middle of a divorce and didn't want to die until it was finalized (if they were still married when he died, she would get everything). I've heard of many noble reasons to live ("my daughter is getting married next year, and I want to be there," "I'm staying alive to see my son graduate from college," etc.), so it was kind of funny to hear of a case where someone's motivation was spite. My primary motivation is to be with my family--because I like them so much. I want to raise the children who were given to me to raise. I'd also like to serve a church mission with my husband after the kids are grown. And I want to write more books. And, okay, I'd like to earn my black belt, too, and sing Messiah again. And grow really old.

But to be completely honest...when mortality rears its head at me from time to time, those motivators cross my mind only briefly. I will still go on, long afer my body wastes away. Somehow I know that my family will be okay. (Plus I would haunt them anyway, to make sure they were!) And someday we will be reunited and enjoy the blessings of being sealed together for time and eternity. My talents also get to come with me, hopefully to be put to good use. (Maybe I'll get a chance to sing under Handel's direction.)

My bedroom closet, my office, and other household chaos are what actually rise up as motivators, because they are scarier than death itself. The very idea of languishing on my death bed, surrounded by relatives and friends who are tripping over piles of junk to see me, is beyond horrifying. Leaving my poor husband to sort through all this stuff would be awful. If spite can keep someone alive longer, surely chaos screaming for order will buy me a few more months. It puts me in kind of a funny dilemma, though. ("Do I get this all finished and lose a reason to live, or do I keep things a mess and stress out about leaving it that way?")

Of course, I can't ignore the overwhelming number of prayers that have been -- and continue to be -- offered on my behalf. I'm sure those have more "staying power" than worrying about a messy closet. The tremendous faith exercised by so many, and the good will and pleasure of the Lord, have put these other factors (medical technology, favorable conditions, motivation, and a craving for antioxidants) together and blessed them for my benefit. And they will continue to do so for as long as is needful--so keep them coming! Let's try for eighteen years, instead of months!

Tuesday, June 12, 2007

Things I can and cannot do

Today's lab report: my white blood cell and absolute neutrophil counts are still too low. (Darn!) I am very vulnerable to infection and illness, and I have to take neutropenic precautions. That's bad.

But everything else looks good enough for me to have my Avastin infusion tomorrow. That's good!

- continue my chemotherapy schedule uninterrupted for now;
- - use this as an excuse to make Prince Jared clean the bathrooms, change our daughter's diapers, and do the laundry;
- go in with my son for our karate belt test on Friday (I guess with a mask on), since I still have platelets and red blood cells; and
- feel less guilty about having a "family only" party for my daughter's birthday this weekend, instead of filling our house with two-year-old's.

- spend a lot of time in public places (should avoid it as much as possible);
- eat raw fruits and veggies or be around flowers and plants (anything grown in dirt)
- be around recently vaccinated or sick people (I break this rule to be near my kids);
- let too much time lapse between hand-washings;
- or do anything else that increases my risk of germs.

I have visions of myself walking around like Michael Jackson with gloves and a mask on, but I guess good nutrition, vitamins, liquids, and rest are a more practical approach.

But hey - at least I CAN proceed with my treatment for now, and I have two whole weeks to try and bounce back before my next infusion.

Saturday, June 09, 2007

Life flashing before my eyes

Despite my recent "good news" MRI scan, I thought I was going to die this weekend.

For one thing, it just so happened that while my white blood cell count was tanking, my two children both got sick. Jacob started coughing and sneezing and complaining of ear pain, and Emma spent the day with me on Friday with a low-grade fever and diarrhea. And to boot, I have not been able to sleep more than five hours before I awaken to a rush of adrenaline and a flurry of things to think about. Foremost in my thoughts are, "Hey, you know, being sleep-deprived is bad for the immune system. Guess I'll sit and stew on that instead of sleeping." So I'm wondering what could possibly be incubating in my wussy immune system, waiting to take me down.

On top of that, I started having rushes of adrenaline that felt like a seizure coming on again. Thankfully it's been so long since I "seized the day", that I can't remember for sure if it's a seizure or if it's some kind of anxiety attack. But on Thursday night it was so bad that I was actually surprised to fall asleep and wake up alive instead of just losing consciousness.

The good news is that I didn't die. (Or at least, I haven't as of the writing of this post.) Instead, I noticed my life flashing before my eyes, which is something that people will often report when they encounter a brush with mortality.

It may actually have nothing to do with thinking I would die, but may actually have germinated a few weeks ago when my dad brought over the old home movies. I saw my first birthday, several Christmases, my horse, and many family gatherings. We also found a videotape of a 1930's radio show performance that we re-created with friends and took to several senior communities back in 1994. (I had to impersonate Kate Smith, singing "Alexander's Ragtime Band.") These were fun flashes that probably put me in that retrospective mode.

Last night we watched The Karate Kid, which took me back to my early college years. I always remember one of my college roommates when I see this movie, because she always tried her best to mimic Mr. Miyagi's quotes, and it made me laugh.

Right next to our game room (where we watch movies) I have my dollhouse sitting on a ledge at the top of our staircase. When I was a kid I was really into dollhouses, and last year it was one of my many sentimental indulgences, finally getting a house for all the miniature furniture and dolls that have followed me around in boxes for decades. It was fun to pause and reflect as I gazed upon it last night.

I spent this morning (early) doing some writing for my next book. Part of it was spent reviewing some past experiences and writings.

About four hours later I noticed my husband getting the kids dressed, and I realized that it was time for my son's baseball game. (I also remembered that I was the snack mom, and thankfully we happened to have enough juice boxes and snack crackers and apples sitting around, so we didn't have to make a mad dash for the store.) Watching my son play baseball is one of my favorite activities. It always takes me back to when his birth mother told us that he would be an athlete. She was right. And I remember those early days of my son's athletic career three years ago. (He is six years old now.) It also reminds me of how baseball was my favorite sport as a young tomboy. If I didn't have to avoid getting beaned on the head I'd be playing it somewhere now.

Today was also the anniversary of my son's temple sealing to our family. He was not yet three months old when he was sealed to us. After the baseball game today we stopped by the Dallas temple grounds and snapped some family pictures. We looked silly standing next to the temple in our Yankees baseball regalia, but it was still fun to be there. We saw a wedding party taking pictures on the grounds, and I was transported momentarily to my own wedding day. Then I spent some time thinking about Jacob's sealing day, and how cute he was as a little baby in his little white suit. I hope that someday when he is grown, he will spend enough time in the temple to learn the significance of the sealing ordinance.

On the way home from the temple we stopped by Tuesday Morning, one of my favorite stores. As we browsed I noticed a bunch of retired Madame Alexander dolls on sale. I did my family's early birthday shopping for me, because I am a huge Madame Alexander doll fan. My dad gave me many of them as a child, and unfortunately I treated them a lot like my Barbie dolls. I cut some of their hair. I would swap outfits among the dolls. I lost some of the shoes and accessories. I role played my favorite stories with them. As I got older I started taking better care of them, and the evolution of my doll collecting history is displayed in my entryway curio. One of my earlier victims was a Madame Alexander "Greece" doll. My great-grandfather is from Greece, so I liked having a doll representing that country. Unfortunately, I liked it a little too much as a kid and so it is not exactly in mint condition anymore. To my delight, one of the dolls I saw on sale was a newer (but still retired) version of the "Greece" doll. In the cart it went. I also managed to get "Sweden" (never had a Madame Alexander "Sweden", but I also descend from Swedes and I have an old/one-legged/one-armed doll that I think was purchased in Sweden); and I also found a cute "Betsy Ross", complete with accessory flag, which I decided was a must-have (after all, next week is Flag Day).

By this afternoon I was pretty tired, but early this evening we headed to our church talent show. My son had practiced one of his favorite songs from school, but he chickened out at the last minute, so I sang "Two Little Shoes" to him instead. And my husband and I donned our clogging shoes and gave "Duelling Banjos" another whirl again. I was back in my high school days again. (Just older and fatter.) I even put ponytails in my hair, which is something I hadn't done in over three decades.

Finally, a big pile of "organization" project stuff had an avalanche in our bedroom. The biggest part of the avalanche (and thankfully an unharmed one) was the wicker trunk containing the remains of Big Bear. (I hear the collective groan from my family members.)

Big Bear is a huge teddy bear that I received when I was two or three years old. I have a cute picture of little me holding Big Bear when he was new (at the time, Big Bear was bigger than me). Since then, Big Bear's fur has completely worn off, he ripped during a pillow fight with my cousin when I was ten, and he was too rotted to sew back together. So he lost a lot of stuffing, and what's left of him is jammed into a kid's size BYU sweatsuit that is safety-pinned to hold him together. He looks pretty nasty, but he was a good teddy bear who served as my companion and my comfort at home, at sleepovers, at camp, and even at college, until I got married (it's no surprise, then, that I call my husband "Bear"). So this ragged flea trap that represents many years of TLC (I'm talking about Big Bear, not husband-Bear) is mummified in its wicker crypt, because it's too ugly and fragile to be useful. But I can't possibly throw it away. (It's like pumping gas. Why do it now, when I've stubbornly refused to for this many years?) My husband would love nothing more than to be rid of it, but he has endured having Big Bear still around in his wicker crypt (just like he always makes sure I have gas in my car). I told him that the only acceptable way to get rid of Big Bear is to bury me with him. But luckily I didn't die this weekend, and I hope Big Bear's great fall during the junky room avalanche was not a foreboding.

Little flashes of life during this weekend that seemed touch-and-go at times. I was happy to have the vitality necessary to do all this stuff, the ability to remember so many moments of life, and the hope of building more flashes in the days, weeks, months, and years to come.

Wednesday, June 06, 2007

The Bubble Girl

I wish this meant I was just a fairy princess who transports herself around via bubble. But it doesn't.

Last week's results were so wonderful, but today I still need LOTS of prayers! They have me doing weekly labs now, and yesterday's test results came back today pretty bad. My white blood cell and neutrophil counts are really low, so I have to take extra precautions to avoid infection, and I have to hope and pray for another miraculous bounce-back. They will test again next week before my scheduled Avastin infusion, and if I am still low (or if I have gotten sick) my treatment will be suspended. That would be awful, since it's been working so darn well.

So I'm being the bubble girl, trying to quarantine myself from illness. It's tricky with kids and camps and allergy season and insomnia and stuff. But I keep hand sanitizer close by and take my vitamins and one of these days I'll be sure to get enough rest. And I'm leaning on prayer again, so please keep them coming!

Sunday, June 03, 2007

Never thought of this before...

...but it came to mind this weekend as we had a family celebration for the naming and blessing of our new niece, who is just a few weeks old.

Little Zoe is so cute and adorable, but as all babies do, she cries when she's hungry or gassy or whatever. I'm sure she is just so fresh from heaven and getting used to navigating her spirit in this new little body and experiencing all kinds of feelings that she isn't used to. And I never thought of this before, but I was thinking how ironic it is that when babies are born, everyone is so happy but the baby does a lot of crying. Then the baby learns to turn to her parents for love, and she starts to discover all the wonderful things about life, and instinctively wants to cling to life.

Later (hopefully a lot later), when someone dies, it's the opposite. They lay aside their mortal cares and their worn-out bodies. They reportedly feel free, happy, and peaceful, and everyone else is doing the crying.

Fortunately, depending on where we are in this spectrum we can look forward to the promise found in Revelations 21:4:

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.

Wednesday, May 30, 2007


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 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)


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!

Tuesday, May 29, 2007

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.