Friday, February 23, 2007

SPK

"- SPK"

That's how I sign off most of my correspondence with family and some of my friends. Yes, this is a "Krista trivia" post. The way I see it, since there are no upcoming plans for a eulogy so far (hooray!) this is the only opportunity for people to learn silly facts about my life.

My monogram is normally "KO". Or "KRO" (if I add in my maiden name), or "KLO" (if I add in my middle name) or "KLRO" (if I use all of them). This is why I don't have monogrammed towels.

But I also have a special set of initials: "SPK", for my title: Soeur Princess Krista.

Soeur came about after my brother Jim returned home from his mission in the Mascarene islands off of South Africa, including time spent on the French-speaking island of La Reunion, where he became fluent en Francais. I hired him as a summer intern at the company I worked for, and during orientation on his first day he asked me how he should address me at work. I guess I had a Peanuts' Peppermint Patty character moment, because I replied that he should call me "Sir." He agreed, since the French word for sister is soeur, which is pronounced kind of like a snobby butler saying "Sir".

Princess is a given, since I am the only daughter in my family, I have never pumped gas, and I am married to Prince Charming. And way up high in the family tree, out on a tiny branch, we eventually connect with the Tudor family of England. Being super-far-distant cousins to people like King Henry VIII is not exactly something we proudly display on family reunion t-shirts or anything, but it's kind of fun trivia.

Krista is the first name I was given. (Actually, I think the plan was to name me Stephen or something like that, until I was born a girl.) When I was little, my friends' moms used to have trouble pronouncing my name correctly, so I learned to answer to anything that began with a "K" sound: Kristy, Crystal, Kierstin, etc. Some people just call me Kris, which is fine and a little funny at family reunions, because just among my first cousins I have a Christopher, a Christie, a Christina, and a Crystal. A bunch of heads turn when someone calls out "Hey, Kris!"

As my youngest brother Blake likes to say, "and the first shall be last, and the last shall be first..." So I put these three together from last to first to compile my official title: Soeur Princess Krista. Sometimes Soeur Princess Krista The Brain-Damaged or Soeur Princess Krista the Tumor-Savant or Soeur Princess Krista the Cancer Survivor, or when my tiny article came out in December I jokingly became Soeur Princess Krista...of the Ensign. As long as no one is using swear words when they refer to me, I'm pretty happy.

My kids have an exclusive title for me that I like even better: MOM. (Or as they sometimes put it, "MOOOOOOOOOOOOOOOOOOM!!!!!")

- SPK

Monday, February 12, 2007

Just a matter of minutes...

...before I am officially past my statistical expiration date!

I was really careful today, making sure my seatbelt was fastened when I drove, and chewing my food very carefully before I swallowed! I'm not a superstitious person, but this date (exactly fourteen months from my cancer diagnosis) was always hanging there in the back of my cancer-riddled mind, like a big cartoon piano waiting to fall on me. Fourteen months was the optomistic end of the prognosis range that I was given.

HA! They were wrong!

One of these days I've got to put on my clogging shoes and dance on what ISN'T my grave!

(Or just dance--because I can!)

I'm not dead. I'm not a vegetable. I'm not wondering who my kids are. I'm not tone-deaf. I'm living and working and singing and dancing and planning trips and birthday parties, and hugging my family and playing Scrabble and looking forward to my first book signing, and enjoying every minute of it all!

This is a good thing. I had to caution myself against believing the statistics about this date. Whenever it would haunt me I would tell myself that it would just be all the more exciting when I pass it by, still going strong. I have heard that some Australian aborigines or members of a certain Kenyan tribe are known for subconsciously willing themselves to die if they believe it is inevitable (like if the "bones" point to them). Sometimes people just die quickly from the shock and despair of a devastating prognosis. And sometimes people are feisty enough to live longer than expected. I was born feisty, so I guess that finally paid off--along with good treatments, a lot of prayer and the good will of God, who has seen fit to let me stay here for now!

Thursday, February 08, 2007

Yessssssssssssssssssssssssssssss!

There's not really a good way to high-five my brain (although the old "oops-I coulda had a V-8" image comes to mind), so I'll have to find another way to celebrate.

The MRI looked good today--hooray! Looks like we'll be going to Chicago, after all. We found a way to navigate around the chemo schedule AND avoid missing Messiah auditions, so we booked our trip, and that's some more good news to share.

I'm writing this from my laptop computer while I get my toxic (but helpful) chemo drip for the next four hours. I also brought my Scrabble board with me, because another patient is scheduled to come in soon, and he's a big Scrabble nut like me. My husband and I had better sneak in a warm-up game before he joins us!

BIG THANKS to everyone who sent me floating into this day on their prayers. I felt those prayers, and they helped me a lot. I hope many of you will join me in a big prayer of thanks.

Wednesday, February 07, 2007

The Gorilla Grin

My dad's grandma had a favorite saying, and I remember it from my childhood days, displayed on a sign in my grandma's house:

It's easy enough to be pleasant
When life goes by like a song;
But the man worthwhile
Is the man with a smile
When everything goes dead wrong!

"Dead wrong" is something that I hope we don't find in tomorrow's MRI. I have reason to be concerned, and I'm frankly very nervous, but I'm not without hope, and I'm glad to know that I will be blanketed with prayers as I go through this process.

My best friend from sixth grade (the one who visited me last year) would always end her correspondence during our teenage years with the phrase, "Keep Smiling!" She always had a pretty smile, and managed to use it, no matter what was going on in her life. I would often think of her when I would read that poem on my grandma's wall.

I'm hardly feeling chipper today, especially since I logged a cumulative total of four hours of sleep in the past 24 hours, which is neither good for the brain nor the immune system (both of which need to be strong). However, I was able to spend a little time volunteering with some other moms at my son's school this morning, and that put a genuine smile on my face.

I have also learned to master what a friend described to me as the "gorilla grin", and I actually attribute much of my professional success to this concept. You see, when a gorilla is about to attack someone, it bares its teeth and appears to be smiling. Kind of like when a dog is wagging its tail to signal aggression but he looks like "hi, I'm a friendly puppy". There was actually a church conference talk in 2005, entitled, "Beware the Evil Behind the Smiling Eyes" http://www.lds.org/conference/talk/display/0,5232,49-1-520-17,00.html
But my gorilla grin really isn't about hiding evil--it's about channeling bad energy into something more calm and constructive. Kind of like how Donny Osmond channels stage fright into great performances.

I'm not into attacking anyone, even though I remember times in the professional arena when the urge would strike. Like when confronting an obnoxious FDA inspector or witnessing some frustrating politics. Mastering the gorilla grin has helped me keep my cool as I grind my teeth and turn the corners up. A smile can usually help diffuse most tense moments. And especially now, as a career patient, there have been plenty of situations where I have wanted to beat my chest and scream. The gorilla grin helps in those matters, although sometimes there is already plenty of humor opportunity to put a smile on my face as I indulge in my inner smart-aleck.

And sometimes when things are really blue and stressful it just helps to kick into the "fake it until you can make it" mode. Of course, that summons Ann Wilson's voice, singing "Dreamboat Annie": "Sad faces painted over with those magazine smiles." But it's not so much that as it is trying to go through the motions of what is desired, until the heart picks up and follows along. It's easier to do when I start counting my many blessings, and when I start to picture the kind words and prayers of so many, being offered on my behalf. These will carry me through tomorrow, so that I can handle the outcome, whether it's "like a song" or just "dead wrong".

Sunday, February 04, 2007

What a problem to have...

I have a dilemma.

On the one hand, Messiah rehearsals for our local Easter concert start at the end of this month. Based on how things have traditionally been done, solo auditions will most likely be held at the second rehearsal, which would be the first weekend in March. I am so thrilled about the possibility of singing in another Messiah performance--something that seemed so unlikely last year.

On the other hand, I have been eager to take my son to Chicago during his spring break from school, in early March. I have been telling him about the Museum of Science and Industry, which was a favorite childhood attraction and field trip location when I was growing up there. He has been very excited about going.

On another hand (or foot, or elbow, or whatever), based on my current treatment regimen, I would need to be in Dallas for lab testing and chemotherapy during that spring break week. At least I hope this is the case, because the alternative would be a bad MRI result this week, telling us that my treatment isn't working anymore. But, hoping for the best, I figured the best way to manage this would be to back the trip up a few days and return home early in the week. It would put us in Chicago during the first weekend in March, plus a couple of days.

It sounded good, and there are some good travel deals available online. Right before I clicked on the perfect flight, it occurred to me that by doing so I would create a scheduling conflict that would make myself (and my husband) unavailable for Messiah auditions.

I'm just so darn happy to be alive and capable of making plans for this spring. So which memorable, grab-the-gusto life experience do I choose? Do I forfeit Messiah so that I can have this special family experience? Or do I disappoint my son so that I can make use of the talents that have been miraculously preserved for me, by singing praises to the One who made all of this possible?

Since the idea of disappointing my son is so repellent to me, I think the decision will be made in his favor. Hopefully, however, I will find some way to make both opportunities happen. And hopefully the answer will not be to have a catastrophic tumor recurrence that frees up the whole spring break week for me. ("Chemotherapy isn't working anymore, so just go live your life while you can...")

I'm hoping that a make-up audition might be possible. (Still waiting for an answer about that.) I'm hoping that some other creative solution will pop up. If not, my son wins and I will just have to sing extra loud in the choir if I want my voice to be heard. And maybe I'll just have to keep living long enough for another opportunity to sing my favorite music.

Meanwhile, I can't help but marvel at how lucky I am to even have this kind of a problem. I am eight days away from my original 14-month prognosis. I'm very nervous about this week's MRI, but right now I'm alive with the hopes of being able to make plans for the spring.

I currently have access to chemotherapy that worked wonders, based on December's MRI, and there is hope that it will continue. It has been amazingly tolerable, which makes it available to me for as long as it continues to work. We'll know within a few days whether that gets to continue.

And I have the ability to sing, despite all of the chaos in my right brain. Only the Lord knows how much that means to me. I have also been blessed to learn, appreciate, and enjoy the music of Handel's Messiah for a long time.

Although I am very eager to resolve this dilemma, I feel very grateful that this dilemma was created by an abundance of blessings and opportunities. Even if I have to give something up, I still get to do something wonderful--something that contributes to this year's resolution: live.

Friday, February 02, 2007

Groundhog Day and Sticky Stuff

Punxsutawney Phil couldn't see his shadow today. That means an early spring instead of six more weeks of winter.

My version of Groundhog Day is February 8. The radiologist and my neuro-oncologist will be looking for shadows on the MRI film, in order to tell me whether I have eight more weeks of the same treatment, or whether we have to scramble for a new approach. I have remained symptom-free (with the exception of losing two games of Scrabble this week -- to my husband, who is slightly dyslexic), so I'm hoping that the MRI will be nice and clear.

Taking life in eight-week intervals has become pretty routine, and while it presents some logistical challenges (it's hard to make travel plans far in advance), I'm always finding more and more delights in the craziest things.

For example, how many people wake up and give thanks for boogers? I'm sure most little kids don't. They are usually trying to dig that sticky stuff out of their nose as quickly as they can sense it. But I've come to appreciate the sticky stuff. (Lucky me--getting cancer so I can learn to be grateful for snot!) Between chemotherapy and dry winter heat, my nasal passages have dried and cracked to the point where I'm frequently blowing out red stuff. I battle it with humidifiers and saline spray and antibacterial ointment on a cotton swab, but this condition is still pretty stubborn. I met another patient in the chemo clubhouse who has the same problem. I know that this is a gross topic to discuss (hope you aren't eating while you read this) but once your head has been cracked open it's easy to get desensitized to gross things.

I still remember watching a children's television show with my son, where they lined a big pipe with sticky goo and then used a fan to blow feathers and junk through the pipe, in order to illustrate how mucus works in our nose to trap the dirt and germs that we inhale. When the sticky stuff is gone, and when the pipe is cracked, the dirt and germs can go places they shouldn't. This was especially worrisome when last week's lab results showed a dip in my immune system, but it's rebounding now, so I may be able to fight most of what is inhaled directly into my bloodstream.

I also try imagining that maybe this might make it easier to blow the tumor cells out of my head through my nose. Probably not really, but it's a good mental image to focus on.

According to Punxsutawney Phil, the days of dry winter weather will soon be over. Hopefully next week's MRI will predict eight more weeks of successful chemotherapy, but as the warm weather and humidity return, maybe it will also herald the return of protective nose goo. And I'll have yet another thing to give thanks for.