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!!!!!!!!