Tuesday, June 27, 2006

Maybe Tonight, Maybe Tomorrow

Maybe Tonight, Maybe Tomorrow, a song by Austin modern rock group, Wideawake, is now available on iTunes, with 100 percent of the proceeds going to the Lance Armstrong Foundation. Inspired by a friend's cancer diagnosis, Wideawake lead singer Scott Leger wrote the track to honor cancer survivors (woo hoo - like me!) across the world. The track debuted May 19 at the LIVESTRONG Gala. Leger says the song "is dedicated to [his] friend and the millions of people affected by cancer. Those who we've lost and those who survive, fight, volunteer, support, research, raise awareness, give and inspire."

I downloaded the song from iTunes and did my best to capture the lyrics, because they are awesome:

I heard the news today
It came out of nowhere
Wish I could run away
But where would I go?

Is this my destiny,
Something so unfair?
What will become of me?
God only knows.

And they say the road to heaven,
It might lead us back through hell…

Maybe tonight, maybe tomorrow
We will win this fight
And bury this sorrow
We’re so alive, still holding on;
Not ready to die,
So we live strong.

My pride is left for dead
As my world gets shaken.
Thoughts inside my head, so hard to control.
I’m staring down the unknown;
One thing for certain:
That it may break my body,
But never break my soul.

They say the road to heaven,
It might lead us back through hell.
So we’re holding on for more than stories to tell.

Maybe tonight, maybe tomorrow
We will win this fight
And bury this sorrow.
We’re so alive, still holding on;
Not ready to die,
So we live strong.

We will live strong...

Sunday, June 25, 2006

Despair and Die

Several weeks ago we dragged out our DVD copy of The Chronicles of Narnia: the Lion, the Witch, and the Wardrobe and watched it with our son. It is well-known for its Christian themes, particularly with Aslan the lion, who sacrifices his life to meet the justice demands of the White Witch, and to save mankind. Later his life is restored. One of the most memorable lines from the movie happens when the White Witch is about to slay Aslan. She raises her dagger and says, "Despair...and DIE!"

Now, since everyone who lives will eventually die, we know that death is not automatically preceded by despair. Even very happy and positive people get tapped by the reaper at some point. Death is part of the overall plan. However, there are different biological responses to hopefulness and despair, which may play a role in the management of serious illness.

Studies have shown that humor, hopefulness, creativity, and other positive and constructive approaches tend to correlate with better immune system functioning, better self-care behaviors, and optimized outcomes. By contrast, despair tends to correlate with depressed immune system functioning, poor self-care behaviors, and poor outcomes.

Despair is more than just the sadness, stress, and grief of dealing with a serious medical condition. Those feelings come and go like the tides of the sea. But within a framework of faith (okay, and maybe with a little chocolate therapy -- we just had a chocolate-themed family party for my daughter's first birthday), those feelings can be managed in constructive ways. Despair, on the other hand, is a lack of faith. A lack of hope. A lack of anything to help stay afloat. Despair will sink a person. Despair...and die.

Have faith and hope...and live. Well, actually, die anyway...someday/eventually...like we all will. But live more and live better.

Sunday, June 18, 2006

Baby, I can drive your car

Assuming that my bouts of illness in recent past were not seizure-related, I am legal to drive again as of June 10. Hooray - a milestone to celebrate! I just have to stay seizure-free.

Of course, the irony is that I no longer have my car! Earlier this year we traded two cars for one seven-passenger SUV, because we only had one driver in the family, and this way we could fit ourselves, the kids, and friends all together into one vehicle. So I'm still grounded during the weekdays when my husband takes the car to work, but it's nice to know that I'm once again street legal, if/when I can manage to get a car into my possession.

I have been spotted driving on those lucky occasions, and it adds fuel to the ever-spreading rumors that I am "done" (as in cured, not dead). Announcements of my recent clear MRI, combined with new demonstrations of independence (taking care of my own kids, cooking my own meals, driving, etc.) have led some of my friends to believe that this is now behind me, like a toenail infection that finally cleared up or something. My theory is that there are so many hopeful, faithful people who have been praying in earnest on my behalf, and so there is a widespread expectation and hope that I WILL be cured. So lots of people are just hearing news that fits well with their good hopes for me. And that's nice, even though I am not out of the woods yet. I'm still in the battle of my lifetime. I still need all those prayers!!!

I also hear a lot of "you look great", which could mean anything from "wow - you're not as bald as I thought you'd be", or "you're not schlepping around in your jammies like the last time I saw you", to "you actually look great, you hottie" or maybe anything in that wide spectrum in-between! It's just nice to know that I still look human, despite surgery, radiation, chemo, sleep deprivation, five months of exercise restrictions, and steroids! (Ba-ba-ba-bald Ba-ba-ba-lloon!)

By the way, being street legal means that I have been "stable" for six months on seizure treatment. I'm actually six months from my surgery date. I had brain surgery six months ago, on December 12. It seems like it was so recent, but I guess time flies when you're having fun. The creepy thing is that it was also when I got my cancer diagnosis -- the worst of the worst, with a 12-14 month average prognosis. It occurred to me that I have already spent about half of that time, which is an unpleasant thought, but then I realized that I could also look at it another way: I am halfway toward beating my prognosis.

Beep beep'm beep beep -- yeah!

Tuesday, June 13, 2006

Slumber Party Therapy

Yes, I'm feeling better than I did during my last post (many have been asking - it's nice to know how much people care).

I'm doing well because I have a diverse treatment regimen. I have my monthly 5-day dose of Temodar chemotherapy (my latest one started yesterday). I take medication to control seizures, and I take vitamins. I try to eat lots of fruits and veggies, drink lots of water, and I exercise EVERY day. (Still going since May 5!!!) My favorite workout is on a bicycle, because it's a good neuro test, I feel like Lance Armstrong, and we added a child's tandem attachment so our son can pedal with me. My husband puts our daughter in a trailer behind his bike, and off we go for a family ride most evenings!

In April I had "gaggle therapy", when my high school friends came to town for a visit. It was awesome! And this past weekend I enjoyed "slumber party therapy". My bestest friend from sixth grade came to visit me from Wisconsin. We used to be in school together in the Chicago area, but tearfully separated when my family moved to Utah during the summer before seventh grade. We remained pen pals and met up again at around age sixteen (that's the photo where I'm sporting my cool 80's headband), but we completely fell out of touch around the time we each got married. So it was a joyous reunion when we recently found each other again after so many years, and it was especially joyous to be able to visit in person. (The other picture is the two of us standing outside Southfork Ranch last Friday.)

I call this visit "slumber party therapy", because it was like a typical slumber party: lots of talking and very little slumbering. My husband joked about how he should have come out into the living room to tell us to keep it down, since that's what dads usually do during slumber parties. As a third-generation insomniac, a former early morning seminary teacher, and the mother of a baby girl who used to have her days and nights mixed up, I'm pretty used to sleep deprivation. But this was such a fun reason for being tired! We laughed and cried and gabbed about everything from old times to current challenges and the faith that carries us through it all. Before we knew it, hours and hours would slip away so fast. Just as it was with my high school friends, it was as though the gap of space and time had completely disappeared, and we just picked up our friendship where we left off. It was good therapy for the mind, body, and soul to add more love and laughter to our lives.

Thursday, June 08, 2006


I woke up this morning, pleasantly surprised to be awake!

Last night was a very rough night. It seemed as though I was having the worst seizures ever, at least as far as the sick feeling goes. There was no accompanying deja-vu feeling or funny smell, as was always the case with past seizures, so I'm not sure what exactly this was. But I had a series of waves of feeling really sick, as though I would lose consciousness. I considered going to the emergency room, but since my original ER experience last November, I have little faith in the competence of the care I would receive there. Back then, the ER doctor insisted that I was not having seizures, and because my C-T scan was clear, "it's not like you have a brain tumor or anything..." Had it not been for my brother (a dermatology resident) who could recognize a textbook seizure, and who insisted that I needed to press for an EEG, I'd be dead by now. Because within a couple of days I was seeing a neurologist, who ordered an EEG and MRI, and voila - seizures caused by a deadly, aggressive tumor. Left untreated, glioblastoma multiforme can kill in a matter of months. So anyway, I'm not likely to revisit that emergency room ever again.

For some reason last night, it got to the point where I wondered if this was IT for me. It's interesting, the thoughts that go through your mind when you think death is imminent. I remembered having scolded Jacob that day, and wished I hadn't. I thought about the things I still wanted to finish. I wondered if Jared would know my preferences for the funeral details. I was really glad that I said "I love you" lots of times to my family. And then, there was a sense of, "hey - this isn't such a big deal." That was an interesting reaction to the situation. I knew that even if this WERE it, there was much to look forward to after this life is over. That was a comforting feeling. However, I still reached for my inner beagle and refused to go anywhere. I wasn't ready to go. I want to live and be with my family. So I got feisty and told myself that I wasn't going anywhere - hopefully it was just the healing process making me feel lousy right now. (Remember Lance Armstrong: "The ironic thing was, the worse I felt, the better I got.") And so when I woke up this morning I was very happy to find myself alive and well.

Throughout the evening, as I pondered what might have happened, I remembered that some of my friends thought I was done and cured, because the latest MRI was clear. And I wondered if maybe some of those friends figured their prayers had been answered, and so maybe fewer prayers were going out. (Each one really counts!!!) As I was told by a dear friend and cancer survivor, you're never "done" with cancer until you're dead. Until then, it's a cycle of treating the tumor, hoping it works, and then checking and waiting for the next tumor to pop up. Remission periods are great, and I guess the longer they last between recurrences, the better the prognosis. So anyway, I'm good for now, but I'm unfortunately (or fortunately) not done. There will be another MRI at the end of July, and hopefully it will be clear once again. There will continue to be chemo each month and whatever else needs to be done. I'm good for now because of the power of prayer, and I hope that those prayers will continue on my behalf, so that I can continue to benefit from them. Got a (hopefully) long journey ahead, because - surprise! - I woke up this morning!

Sunday, June 04, 2006

Buster, Nemo, and Me

Our home already has two examples of great physical endurance, and I hope to become the third.

First of all, we have our beagle, Buster. On June 11 he will celebrate his fourteenth birthday. He was our first "furbaby", acquired as soon as he was weaned, as a birthday gift to me from my husband. Beagles are known for their tenacity, and I have blogged before about my "inner beagle" as a symbol of endurance. Beagles are also known for their merry faces and dispositions, and for their rich, distinctive voices (more attributes worth trying to emulate).

The average lifespan of a beagle is 11-15 years, so 14-year-old Buster is technically an old man. It's amazing that he has made it this far, because he is not exactly in peak physical condition. He is fat and has had a worsening heart condition for years. He has had a couple of surgeries to remove tumors. He has chronic problems with his teeth, and often has to have several removed when he has his regular checkups. He has allergies, he's going deaf, and he has joint problems. All combined, one would expect him to be hugging the early side of the bell curve, but instead he remains a vigorous and cheerful companion living on borrowed time.

And then we have Nemo the betta fish. Nemo was a Christmas gift to our son in December 2004. We bought him at a kiosk at the mall, where they sold betta fish in cool glass block "fishbowls". We were told that this fish would be easy to maintain, which was a good attribute for a creature placed under the care of a three-year-old boy. They told us to feed him/her/it a couple of tiny pellets a day (or whenever - if we miss a few days it won't matter), and then when the water gets cloudy (maybe once a month), just empty out half the bowl and refill with spring water. That's it.

The bowl was cleaned for the first time yesterday - more than 17 months after we brought Nemo home. I swear that this fish must eat its own poop. The water has remained crystal clear since the day we brought Nemo home, and the only reason we finally changed the water and cleaned the bowl was because Nemo (a vibrant red fish) started to change color, and we could see some excess food building up in the gravel.

Unlike the 28-cent Walmart goldfish (also purchased in December 2004 but died two weeks later - you get what you pay for), the average lifespan of a betta fish is anywhere from 1-3 years, and the average age of a betta fish in a store is six months. So we assume Nemo is almost two years old. Once again, we have a pet who is enjoying an uncharacteristically long life under their circumstances (I mean, come on - the poop-eating fish living in the same water for well over a year, still alive and feisty at an age when many betta fish have been flushed into the next life).

I swear that there are times when Buster and I look at each other as if to say, "who's going first, Short-timer, you or me?" Same thing when I look at Nemo. None of us has statistics on our side. We have to find our own staying power. I think faith and hope and stubbornness have kept me going so far. Maybe Buster's staying power comes from his merry disposition and the free use of his powerful voice. And maybe Nemo just has (excuse the expression) a high tolerance for crap. Maybe there are lessons to be learned from these tenacious creatures, so that I can join their ranks and push the upper limits of my lifespan.

Thursday, June 01, 2006


...well, actually N.E.D.P. = No Evidence of Disease Progression!

MRI looked "beautiful" today, according to my oncologist. I wonder if Carlos (my hair stylist) gets any credit for that. (Speaking of Carlos - I FORGOT to ask my doctor about highlighting. I'll have to follow up...) And except for forgetting to ask about the highlights, I passed all my neuro tests with flying colors. Once again, being sober pays off. I also clocked in nine pounds lighter than last month, so that daily exercise (26 days so far) is also paying off.

Big thanks to everyone for your prayers. It was easy for me to be calm throughout this day, because any time I started to worry, a voice would remind me about the many prayers that were being offered on my behalf. And it really carried me through what is normally an agonizing moment.

So now we are busy planning something fun tonight to celebrate, and my N.E.D.P. brain is singing and taunting the Reaper, who was foiled once again:

All our times have come
Here but now they're gone
Seasons don't fear the reaper
Nor do the wind, the sun or the rain
We can be like they are
Come on baby... Don't fear the Reaper