Wednesday, May 31, 2006

A Little Entertainment During the Suspense...

"Good Riddance (Time Of Your Life)" by Green Day:

Another turning point, a fork stuck in the road
Time grabs you by the wrist, directs you where to go
So make the best of this test, and don't ask why
It's not a question, but a lesson learned in time

It's something unpredictable, but in the end it's right.
I hope you had the time of your life.

So take the photographs, and still frames in your mind
Hang it on a shelf in good health and good time
Tattoos of memories and dead skin on trial
For what it's worth it was worth all the while

It's something unpredictable, but in the end it's right.
I hope you had the time of your life.

It's something unpredictable, but in the end it's right.
I hope you had the time of your life.

It's something unpredictable, but in the end it's right.
I hope you had the time of your life.

Pray for Peace, People Everywhere

Remember that Christmas song, "Do You Hear What I Hear?" In my head I keep singing this line from it: "Pray for peace, people everywhere..."

I know that it's not Christmas. (Yay - I know the correct date - at least that neuro test passed!) Instead, it's MRI Eve. A time to pray for peace...and hopefully another accurate and reassuring scan.

We are coming up on nearly six months since my diagnosis of a cancer that has a 12-14 month statistical prognosis. The likelihood of tumor recurrence within the first 6-9 months is high. One news article once gave me the willies by talking about how "most" GBM patients see the first signs of a fatal recurrence within the first nine months. I have an uneasy feeling but strive to remain hopeful. After all, based on the way I can breeze through any neuro test (100...93...86...79...72...65...58...51...) and easily navigate a bike through my neighborhood, I would appear to be okay. So I hope that the MRI will agree.

There have been other nervous times before, and I was carried through those times on the faith and prayers of good family and friends. I look forward to that help again, for I know that many are praying (and some are even fasting) for me. Every one helps, and every one is appreciated.

Tuesday, May 30, 2006

Back to Life

Today included a "back to life" experience. I was reunited with Carlos, my favorite stylist. I finally have a head that can endure a third-party washing, combing, and styling (if they are gentle - my right side is still tender), and I was ready for a "Carlos" caliber style (because he is a miracle worker who can read my cancer-riddled mind and give me the hair that I want). So off I went today for my first "real" haircut in more than six months. It was awesome! Carlos was running behind, so he treated me to a complimentary hot towel conditioning - a very pampering experience - before I got my turn in the chair.

Together we surveyed the reality of my roots, which are quite deep, since my last highlight appointment was before my surgery. Even my husband's best efforts to "say something nice" have failed to conceal the brutal truth about my two-toned coif. But under the circumstances I have been both too sore to endure a foil wrap, and too wary of putting so many chemicals into my head. I promised Carlos that I would check with my neuro-oncologist to see what she thinks about highlighting a head with cancer in it. Hopefully she will sanction the proposal. If not, well, I can always go as Cruella DeVille this Halloween.

So, no highlights for today. But a hot towel pampering and a super cut and style from the miracle worker made me feel like I was back to the good life again.

God's Desk

Now that my home office is gorgeous again, I can survey the things that inspire me as I work. Over my desk are various reminders of professional achievements (framed certificates/college diploma, my article that was published the same month as my tumor diagnosis, etc.), reminders of personal achievements (my son's artwork, family pictures, etc.), and some things that really tickle me (gifts from former employees and co-workers, a framed copy of an advertisement that features my son when he was a baby/model, a box containing "CEO Barbie" - dressed in a pinstripe suit - so I could pretend I looked like that when I became president of a medical device company - the one whose ad features my son - and one book that influenced me as an adolescent second only to the scriptures: Real Women Don't Pump Gas). Hanging on the wall opposite my desk is a framed print of The Elder Sister, by William Adolphe Bouguereau, which along with a matching mousepad were gifts from two of my younger brothers who lived with us one summer. I also have a shelf with some antique medical devices and pharmaceuticals displayed, along with some antique medical books (including one ominous copy of Essentials of Neurology -- who knew??). It's hard not to walk into my office without learning a lot about me. Thank goodness it's not the huge mess that it used to be (and thank goodness I'm not, either).

In his book, 101 Exercises for the Soul, Dr. Bernie Siegel says that over God's desk there is a plaque that reads, "If you go around saying 'I've got a miserable life', I'll show you what miserable really is. And if you go around saying 'I've got a wonderful life', I'll show you what wonderful really is." Whether that is literally true or not, the concept is right on target. Misery does breed misery, and gratitude does reveal an abundance of blessings. Dr. Seigel goes on to say that "The future is unknown, and we should never let our fears, worries, and negative attitudes prevent us from enjoying the day and finding fulfillment, no matter what tomorrow seems to hold."

This is a natural time of fear and worry, awaiting this week's MRI scan. We don't know whether it will give us one more sigh of relief, or whether it will open a new Pandora's box. My dad put it well after I told him the results of my last MRI scan, when he said, "Of course it was good, and it will continue to be good until the Lord decides you are finished down here." (Hopefully cleaning my office wasn't the last thing I needed to do in this life!) He makes a good point. But when the medical team treats recurrence as a "when", not an "if" situation; and when "glioblastoma multiforme" automatically labels me in their world as the walking dead who will hopefully string along for a few extra months, it takes a concentrated effort to avoid absorbing that attitude. But no matter what the next scan looks like, I have to remember that my only guarantee is today - in some portion, at least. Even if I were somehow miraculously cancer-free. That's how it is for all of us. We have today. Tomorrow could bring anything - plummeting aircraft, freaky aneurysm, drunk driver, unsanitary restaurant workers, bird flu - or whatever. Today brings an opportunity to live, love, and savor. If I make it to Thursday, I will have an emotional ride through the MRI tube and a sentencing hearing with my oncologist. Whatever is, is. I know that I will have the resources I need to deal with whatever "is". If I spend each Today acknowledging the wonderful life that I have, and the great blessings that are always attending me throughout this experience, perhaps Thursday's outcome - whatever it is - will be an opportunity for God to show me what wonderful really is.

Monday, May 29, 2006

The Space Shuttle, Cleaning My Office, and Living with Cancer

It seems like a party game - what do these have in common?

I remember hearing a long time ago that the space shuttle consumes a huge amount of fuel and energy during the lift-off, and then once it has cleared the atmosphere and is able to orbit, it just coasts along easily.

This morning I was organizing my office - one room in my house that is always a disaster. I was doing my quasi-manic/depressive impression halfway through the process, where I looked around and got overwhelmed at the remaining amount of work to be done. I was exhausted (although - hooray - I did sleep pretty well last night), and I thought this just couldn't be done. For some reason, though, I remembered the space shuttle and thought that if I could just persevere for a little while longer, the task would start to get easier. And it did. Soon I was finishing up, and it was much more manageable. And now I'm sitting in a clean office, feeling pretty pleased with myself.

Someone recently asked me what it was like to live with cancer every day. Well, at first there was the initial shock and insult of the news, followed by an intense period of grief and adjusting to this new circumstance. It consumed a lot of energy and effort. But now I think I'm in that orbit mode. Don't get me wrong - it's not a breeze by any means. But it's easier to manage on an every day basis than it used to be. And sometimes I guess I have to leave orbit mode and persevere through some dips and dives -- like this week, with the dreaded MRI coming up soon. I have a choice: I can give in to the worry and crash and burn, or I can keep pushing on through until I am safely in orbit again.

Thursday, May 25, 2006


I come by it honestly, as a third-generation insomniac. For as long as I can remember (even way back in my B.C. life) I would lie in bed with a steady stream of thoughts that wouldn't quiet down. Sometimes they would be worries. Sometimes it would just be a song that persistently replayed in my head. Sometimes they are just random thoughts - happy, sad, neutral, whatever - that want their time onstage.

One thing that has fascinated (and pleasantly surprised) me is how well I have slept in my A.D. life. That is, until very recently.

June 1 is my next MRI scan - the next peek into my brain to see if anything is growing there. Meanwhile, I am to be aware of - and report - any neurological symptoms, including the return of seizures. Thankfully (knocking wood) I have not had seizures for a long time. But I have a terrible fear of them returning, not only because they are so unpleasant, but because they may signal disease progression. I have an uneasy feeling about this upcoming scan and such an awful fear of seizures, that I am hyper-sensitive and paranoid about anything that comes close to a seizure. Any time I feel deja-vu, or start to feel a rise in my stomach, or even if I come near anything that has a strong smell, I start to panic and wonder if a seizure is coming on. And then I wonder if I am going to have a hysterical seizure simply because I am so afraid of them. Also, because these seizures started with the "smell nightmares" - where I would wake up with adrenaline rushing, followed by a funny smell - I have a fear of going to sleep and waking up with one of those again. On a few occasions - like tonight - I would start to fall asleep but would wake up with adrenaline rushing and heart racing. Over and over again. No funny smell, though, so hopefully I'm just experiencing some anxiety.

I read somewhere that if you embrace fear, it will fall asleep in your arms. I keep reminding myself that - okay - even if I have a seizure, it doesn't necessarily mean there is disease progression. And even if there is disease progression, it doesn't necessarily mean that the game is over. Acknowledging the fear helps minimize it down from a big monster to a little baby that will hopefully fall asleep in my arms.

And hopefully I can finally fall asleep in my husband's arms...

Wednesday, May 24, 2006


I have a fervent wish to still be around when my son dons his graduation cap and gown, and tonight there is an opportunity to at least see one such moment. Jacob has his "Pre-K" class graduation tonight - in a ceremony complete with cap and gown. Pre-K graduation seems a little silly and contrived, but hopefully it will whet his appetite and give him a desire for many more graduation ceremonies to come. And hopefully this won't be the only one I get to attend.

Jacob is having some sentimental moments as he ponders the "goodbyes" from preschool teachers and friends. As he would tell me how much he misses someone, I let him know that when we love someone, we miss them when they are gone, and we are all the happier when we see them again. (Laying a foundation of understanding that hopefully he won't have to apply until he is an old man.)

We chose "Camp Mama-atta-homa" for his summer learning experience before he starts kindergarten in August. My first baby in kindergarten. It's exciting.

Meanwhile, my daughter, Emma (age 11 months) is threatening to walk. This milestone is imminent.

Kids grow so fast, because life in general moves so fast. On the one hand, I am so excited to see these milestones fly by, because maybe if they go fast enough, it will be easier for me to be around to see them. But sometimes it's just fun to slow down and savor the "today" moments, while it is still today.

Wednesday, May 17, 2006

May 17

Today (May 17) was Livestrong Day. Lance Armstrong's foundation always commemmorates this day every year, as it was the date when Lance Armstrong was diagnosed with cancer. They ask people to wear yellow and/or Livestrong apparel, and they have various activities to promote cancer awareness and advocate cancer-related causes. I wore my Livestrong polo shirt, baseball cap, and wristband, and when my dad and I went out to lunch, I got a lot of questions about whether I worked for the Lance Armstrong Foundation. (I don't.)

May 17 is also a special day each year for my husband and me, because it is our "kiss-a-versary." 23 years ago on May 17, we had our third date and I got a nice kiss on the doorstep as Jared dropped me off. He remembers this date, too - he even puts it on his PDA calendar. (How many husbands actually do that? I'm LUCKY!) It was also the day that I took and miserably failed my AP History exam, because I was distracted by "date tonight with Jared - woo hoo!"

We celebrated by having some new furniture delivered today. Because I can't drive (which is so silly because I can tool around skillfully on a bicycle...and I must confess that I did actually break the rules and tried driving a little bit last was weird), I can't visit my clients, so they have to come to my home office for in-person meetings. So now I have some nice, new living room furniture (because it serves as my office lobby) and a nice, new dining table & chairs (because it's also my conference table). See - it's like I said before: cancer has its privileges.

Today also marks my eighth day of consecutive exercise - I'm back into the obsessive exercise groove again! Daily exercise - no excuses - unless a doctor says to stop (and then only when arguing with the doctor doesn't change their mind). That's the policy that worked for me really well in my B.C. years. I want to beat my previous three-year streak (especially because that would involve surviving for three years). I kicked it off on May 5 with Relay for Life, and I haven't stopped since. Lately we've done a lot of bike riding as a family, now that my daughter is old enough to sit with her brother in the trailer that Jared pulls behind his bike. It makes me feel very Lance Armstrong-ish as we pedal around. (Especially today as I did so in my Livestrong gear!)

Living strong and loving strong, and celebrating both today on May 17.

Monday, May 15, 2006

What Sweeter Music

Okay, so someone asked for details about the good choral music I like to listen to. Here's a quick list:

1. Anything performed by Evening Song (because my husband and I used to sing with them, and were part of the group during their first three CD recordings). You can visit them at to order a CD or listen to a sampling in their recital room.
2. Anything written/arranged by John Rutter or Mack Wilberg (I accidentally left them out of my list of favorite composers!).
3. Anything recorded by the Mormon Tabernacle Choir under their new label (especially because they sing a lot of stuff by Rutter and Wilberg on these newer CD's).
4. Handel's Messiah as recorded by the Monteverdi Choir and conducted by John Eliot Gardiner(Philips/Polygram label). It's hard to find, and it's expensive, but it's the best recording of that oratorio!
5. Anything recorded by the Choir of Kings College, Cambridge.
6. Anything recorded by the Tallis Scholars.
7. The Choral Moods CD recorded by the Choir of Trinity College, Cambridge (especially Allegri's "Miserere Mei, Deus" - which is purported to be the song whose score used to be so carefully guarded by the Vatican until Mozart heard it once and wrote it down from memory because he loved it so much - and Barber's "Agnus Dei", which is a choral version of his famous "Adagio for Strings" that a lot of people tell me is "the music from Platoon")
8. Requiems written by Brahms (especially "How Lovely Is Thy Dwelling Place"), Durufle (especially "Pie Jesu"), and Faure (ditto on the "Pie Jesu"). (Hope that doesn't sound morbid, recommending requiems!)
9. Vivaldi's Gloria (especially "Et in Terra Pax" and "Que Sedes Ad Dexteram Patris" - the latter because it is a kick-butt alto aria that I wish I had the chance to perform somewhere).

And that's just what I came up with from the top of my pumpkin-carved/radiation seared head!

Broken Things To Mend

I had a great Mother's Day yesterday. My son made me three cards (including one that he signed, "love, Jacob Oakes") and told me I was "the best mom in the whole world." He made me a little potted plant in preschool, and is very proud of it. He also sang his heart out with the Primary children in church, as they sang special songs like, "Mother, I Love You". His little face beaming at me while he sang was even more precious than the nice Coach watch that his daddy gave me! My husband also made sure I was treated to breakfast in bed and Sunday dinner (including dishwashing service) without my having to lift a finger. My daughter's gift to me was mastering the word, "Mama" - which she repeated loudly throughout our church service. It was a fun day.

Another treat I had yesterday was the re-discovery of a general conference talk given by one of the leaders of our church, Jeffrey R. Holland (who happened to be the president of BYU when I was a student there). The talk (which is now an Ensign magazine article) was called, "Broken Things To Mend" (You can click on the title to view the article.)

In the article there is a wonderful poem, called, "The Carpenter of Nazareth":

In Nazareth, the narrow road,
That tires the feet and steals the breath,
Passes the place where once abode
The Carpenter of Nazareth.

And up and down the dusty way
The village folk would often wend;
And on the bench, beside Him, lay
Their broken things for Him to mend.

The maiden with the doll she broke,
The woman with the broken chair,
The man with broken plough, or yoke,
Said, “Can you mend it, Carpenter?”

And each received the thing he sought,
In yoke, or plough, or chair, or doll;
The broken thing which each had brought
Returned again a perfect whole.

So, up the hill the long years through,
With heavy step and wistful eye,
The burdened souls their way pursue,
Uttering each the plaintive cry:

“O Carpenter of Nazareth,
This heart, that’s broken past repair,
This life, that’s shattered nigh to death,
Oh, can You mend them, Carpenter?”

And by His kind and ready hand,
His own sweet life is woven through
Our broken lives, until they stand
A New Creation—“all things new.”

“The shattered [substance] of [the] heart,
Desire, ambition, hope, and faith,
Mould Thou into the perfect part,
O, Carpenter of Nazareth!”

- George Blair, “The Carpenter of Nazareth”

Saturday, May 13, 2006

Dog and Butterfly

People don't have to know me for very long to realize how much I loooooooove music. Most of what I love to hear is the kind of stuff I'd hopefully hear in heaven someday (especially good sacred choral stuff). The more I have participated in music, the more I have learned to appreciate beautifully written stuff.

At the same time, however, I have some favorites that probably don't waft through celestial Muzack, but they feel great to listen to. My personal theory is that well-written music in general is good for the brain, so I like to treat it with both the inspired stuff and the fun stuff.

I am a super-huge fan of the girlie rock duo, Heart. Only the Longflicks will ever top them, I think. (Only die-hard readers of my blog might know who the Longflicks are!) When I'm in a "let-out-some-steam" mood, I love to listen to "Barracuda", and sometimes I just love how awesomely clean the drums are in "Crazy on You". But from my early junior high years I fell in love with their ballad, "Dog and Butterfly". I would listen to it on the radio often as I fell asleep at night. There was something soothing about the guitar and Ann Wilson's voice. I had NO idea what this song was about, but for some reason I liked it a lot.

Now, 28 years after the song was released, I have it on CD, and I listened to it a bunch of times today. I still couldn't get what the song was about, so I studied the lyrics and found an article online about it. It turns out that Ann Wilson was inspired to write the song after watching her dog chase a butterfly around the yard. Her sister, Nancy, was quoted as saying that, "As Ann watched her dog it struck her as symbolic as to how life can be. When you're an earthbound creature we're always jumping and reaching for things we can never really catch, but you try anyway. And that's the point of the song, we're always trying to grab at something higher."

There I was with the old man,
Stranded again so off I'd ran.
A young world crashing around me;
No possibilities of getting what I need.
He looked at me and smiled,
Said "No, no, no, no, no child.

See the dog and butterfly; up in the air he like to fly."
Dog and butterfly; below she had to try.
She roll back down to the warm soft ground, laughing
She don't know why, she don't know why
Dog and butterfly

Well I stumbled upon your secret place
Safe in the trees you had tears on your face
Wrestling with your desires;
Frozen strangers stealing your fires.
The message hit my mind
Only words that I could find:
See the dog and butterfly; up in the air he like to fly.
Dog and butterfly; below she had to try.
She roll back down to the warm soft ground
Laughing to the sky, up to the sky
Dog and butterfly

We're getting older, the world's getting colder.
For the life of me, I don't know the reason why.
Maybe it's livin' making us give in.
Hearts rolling in, taken back on the tide;
We're balanced together, ocean upon the sky.

Another night in this strange town
Moonlight holding me light as down
Voice of confusion inside of me
No begging to go back where I'm free
Feels like I'm through,
Then the old man's words are true:
See the dog and butterfly; up in the air he like to fly.
Dog and butterfly; below she had to try.
She roll back down to the warm soft ground
With a little tear in her eye.
She had to try, she had to try.
Dog and butterfly

So I guess whether its fighting cancer or following any other challenging dream, we just have to try. "Maybe it's livin' making us give in", but we can't give in or give up. We have to try. And maybe we might be as silly or stupid-looking as a dog jumping around and chasing a butterfly. (My beagle is so tenacious, he can be funny to watch when he is going after something.) And maybe after trying and trying we fall back down with a little tear in our eye. But we still have to try.

No wonder I like that song! I mean, it's not exactly Handel or Bach or Mozart or Brahms (my favorite composers), but it's a feel-good song with a feel-good message.

Friday, May 12, 2006

I get to take chemo!

How silly is this - being excited about taking chemo?

My white blood cell counts are a little higher - still a little low, but my neutrophils are way up, so I'm cleared to start another 5-day high dose of Temodar.

And maybe it's okay to eat a raw vegetable again!

Life Flashing Before Your Eyes

I've often heard people refer to their "life flashing before their eyes" when they were in a perilous situation.

I am neither in a plummeting aircraft nor observing an oncoming drunk driver in a Mack truck. My threat is more of a slow motion thing. So I guess the life flashing before my eyes is more of a slow motion thing.

One of the "perks" of cancer is the opportunity to reflect intently on one's life. I've posted before my thoughts about how I have been blessed with a good life (a great life, actually). But it's also been kind of a "This is Your Life" season for me, where I have had the opportunity to be transported back in time. Back to my seminary teaching days, as I have been in touch with some of my seminary students. Back to my singing days with Evening Song choir, as we rejoined the group for a rehearsal and an upcoming tour. Back to my dancing days with Jared. Back to my high school days with "the gaggle". Back to the many years of Messiah. Back to the family vacation and "second honeymoon" days at Disney World. Back to the day when my son was born, as recently relived with his birth grandmother on the phone. And so on.

Long, long ago B.C. (before cancer) - about 11 years ago - during a trip to New York City, I had my first taste of time travel back to the sixth grade. I saw Shaun Cassidy perform on Broadway, and I caught him afterward at the stage entrance for an autograph. I think I even touched his jacket. He was my obsession when I was in the sixth grade, and seeing him in real life took me back to those days when I would have fainted at the idea of getting to meet him.

That crush had long-since been transferred to my husband, but there was another part of that sixth grade era that I have missed: my best friend at the time. Her name is Dawn, and we maintained a friendship not only during that sixth grade year at Lake Zurich Junior High School (in Illinois), but also for years afterward, despite my family's move to Utah during the summer before seventh grade. We wrote each other frequently and had a fun reunion at the Great America amusement park during a family trip back to Illinois when I was about sixteen or so. We continued to correspond for years thereafter, but fell out of touch around the time that we each got married. I would often think about my good friend and wonder where she was, how she was doing, etc.

I recently had a nagging feeling that I needed to find her again - NOW. And thanks to the magic of Google, I was able to find her! It has been a fun and exciting reunion as we have been catching up with each other through email and phone conversations, and every time we talk I get to have that fun time of life "flash" before my eyes. Dawn is coming to Texas for a visit next month, and I am very excited for the opportunity to let her meet my husband and kids, and to relive another great time of life.

Thursday, May 11, 2006

Eat Right, Exercise, Die Anyway

I once worked for a man who laughingly told me about the wisdom he found on a bumper sticker: "Eat Right, Exercise, Die Anyway". I think he liked it so much because it helped him feel better about the fact that he DIDN'T eat right, and he DIDN'T exercise. Of course, sure enough, because he was a heavy chain smoker, he did die anyway from lung cancer.

Those words came back to my memory as I considered the irony of my situation. A couple of years before my cancer diagnosis I had changed my eating habits. I was exercising every day - no exceptions. I was getting closer to a healthy weight and I felt great. Put those together with the standard Mormon ways of never drinking or smoking and not even drinking coffee, and I'd say I had a pretty healthy lifestyle. I was trying to avoid heart disease and diabetes, which based on family history were much more realistic health risks than some random, obscure brain cancer called "glioblastoma multiforme". "Eat right, exercise, die anyway" hit too close to home for me!

I would make a small amendment, however, to this unfortunately true statement:

"Eat right, exercise, die anyway - BUT - eat right and exercise anyway."

There isn't much I can control about my cancer, but I can control some lifestyle choices that will help me hang on as long as possible. I need to be a good surgical candidate, if surgery is ever needed again. I need to have physical strength to endure whatever treatments are needed. I need a strong immune system. Heck - I need to fit into the MRI tube!!!

And if all else fails...I need to leave behind some photos for my family that don't make me cringe! Steroid abs and multi-chins, GO AWAY!!!

I'm not getting into dietary extremes, but I am trying to incorporate as many phytonutrients and antioxidants as possible into my diet. Lots of fruits and veggies, as well as lean proteins to help heal damaged tissues. Brown rice instead of white. Whole wheat pasta instead of pasty white. Just little things like that whenever I can.

For those of you who have read from the early days of this blog, you may remember my lament over the breaking of my three-year daily exercise streak when I had my craniotomy. From that time I have had various restrictions placed on physical activity. When those started to ease up, I enjoyed resurrecting my clog dancing days and being able to pick up my baby girl. And then I had my stereotactic radiosurgery. And my high fever. Setbacks that restored some restrictions. But - hooray - I was recently told that I can exercise without restriction, provided that:
1) I ease into it; and
2) I breathe a lot to keep my blood pressure (and therefore pressure on my brain) to a minimum.

And so...I have decided to become a daily exercise fanatic again. I used the Relay For Life as my launch date, and every day since then I have done SOMETHING for exercise. Even with a nasty cold, there is something that I can do each day. The success of my three-year streak is based on a "no excuses" approach. If the question is changed from "will I exercise today" to "WHAT will I do for exercise today", then it becomes easy. Also, having a variety of exercise options helps a lot. When the weather is nasty outside, I have a treadmill and lots of workout tapes inside. I can do a short strength-training workout or take a long walk. Or we can put on our clogging shoes and dance. If I'm too sick and miserable and wiped out for a strenuous workout, I can do yoga or flexibility exercises. Just something every day, to stay in the habit.

The other day we went for a family bike ride - something we used to enjoy until about a year ago, when our daughter was born. She is finally old enough to sit with my son in the trailer that my husband pulls behind his bike. We toured the neighborhood and had a nice time, and as we returned back to our house, I alighted nimbly from my bike and wondered aloud why on earth I am still under doctor's orders not to drive a car!!!???!!!

Oh, well. Maybe driving will be a milestone to look forward to. Meanwhile, today is Day 7 of my new life as a daily exercise fanatic, and I hope to surpass my earlier streak of three years.

Gonna die anyway - someday. We all do. (Having a flashback to the movie, What About Bob?, when the psychiatrist's kid, Siggy, tells Bill Murray's character that "We're...ALL...GOING...TO...DIE!")

BUT - Eat right and exercise anyway.

Monday, May 08, 2006

Ooh, My Head

We just finished a fun moment, dancing with our son in the living room to the LaBamba soundtrack. (I'm still sicker than a dog, but it was fun to try.) I decided that one of the songs, "Ooh, My Head" was probably my theme song. Of course, our favorite song on the soundtrack is "We Belong Together":

You're mine and we belong together
Yes, we belong together,for eternity

You're mine, your lips belong to me
Yes, they belong to only me,for eternity

(Jacob and I share a special smile during this part):
You're mine, my baby and you'll always be
I swear by everything I own
You'll always,always be mine

You're mine, and we belong together
Yes, we belong together, for eternity

Jacob knows that "eternity" means...for-EVVVV-er.

This was our fun moment of the day. The icky moment of the day was when I was conversing with my oncologist's office about the delay in my chemo regimen because of my lowered white blood cell and neutrophil counts. I mentioned hearing that glioblastoma can double in size every three weeks, so I was worried about delaying my chemo treatment at least one third of that time. The reply I received was that it is only that aggressive "when" the tumor becomes resistant to chemotherapy and goes out of control, and I do not CURRENTLY have any clinical signs of that problem. Unfortunately, I confirmed with them that yes, this is considered to be a WHEN, not an IF situation: my cancer cells will ultimately develop an immunity to chemotherapy. The blow was softened with reassuring possibilities: it may take a long time for that to happen, that's why we monitor so often, there are other treatment options, research may find a cure or a long-term solution, etc., etc., etc. But still - I had an icky feeling throughout the day, like I was given something new to add to my "in case you run out of things to worry about" list.

BUT - reminder to self: trust not in the arm of flesh. Sure, there are icky possibilities. This is an icky cancer. People die from it pretty quickly. When I was at Relay For Life and met other cancer survivors, I got the same reaction from each survivor that I met, when we did the "what kind do you have" exchange. These people (these fellow cancer battlers) would hear me say, "brain cancer", and give me that, "oh,wow - that's too bad - dead woman walking" look. It was weird. It's bad news among bad news. Glioblastoma multiforme - the most insidious of all brain cancers on top of that. No wonder I sometimes get treated like the walking dead. But...this is all based on the reasoning of man and not the wisdom of God. Trust not in the arm of flesh...

For some comic relief, my husband and I had a good laugh today despite our initial gut wrench reaction to the "resistance to chemo" possibility. There is a scene in the movie, The Princess Bride, where the hero wins a roulette-style battle of wits over which drink contained iocane powder, a tasteless, odorless poison that kills instantly. When the opponent dies, the hero reveals that both drinks were actually poisoned, but he had spent the last five years building up an immunity to iocane powder. We both remembered this scene, and laughingly decided that perhaps the secret ingredient in Temodar is iocane powder. Unfortunately, though, building up an immunity will threaten my life instead of save it. So again, it's one more new thing to keep those prayers fresh.

And meanwhile, as we were reminded as we danced to the La Bamba soundtrack: despite "Ooh My Head", we know that "We Belong Together" (for eternity).

Sunday, May 07, 2006

"Life" ended early - but it was great

Relay For Life, I mean. Just a few hours into the event, it was called off because of approaching severe weather. Considering that our campsite on the field was directly under power lines, we were grateful for the precaution!

Relay For Life is a fundraising event for the American Cancer Society. You form a team and take turns going around a track all night (because cancer never sleeps). It is also an uplifting event. Cancer survivors get a purple t-shirt to distinguish ourselves from everyone else (who gets a white shirt). There was a special dinner before the event for cancer survivors and their caregiver. We listened to a speaker who is both an M.D. and a cancer survivor, and she delivered a great message about hope. Speaking of her lymphoma, diagnosed more than 13 years ago, she said that her cancer was not "incurable" -- it was a cancer for which researchers are looking for a cure. Her hope lies in the fact that her latest remission was her longest (nearly 7 years) before a recurrence had to be treated, and so if her next remission is at least that long, there will be even more advancements in treatments (and perhaps even a cure). And she must have read my blog or somehow overheard my brother talking to me about prognosis -- or maybe great minds just think alike -- because she mentioned that prognosis information is based on other peoples' histories, and they had no history of lymphoma in someone exactly like her.

After the speaker finished, we had a pinning ceremony. Survivors were asked to turn to their caregiver and pin them with a special caregiver pin. It was a tender moment of thanksgiving as I pinned my husband and we tearfully gave each other a hug and kiss. Then all the survivors were asked to stand up, form a circle, and hold hands (of course, my first thought was my compromised immune system as well as the likelihood of others with the same problem, and the wisdom of holding hands...this moment brought to you by Purell, perhaps??) and then we each turned to the person on our right and pinned them with a special survivor pin.

Soon afterward the relay began with an opening ceremony that included a survivor lap around the track. My son held my hand and walked/ran with me. Then caregivers were invited to join in on the second lap, so my husband (holding our daughter) joined us. Then everyone joined in for the third lap, and afterward each team was to furnish at least one participant ad infinitum. A short while later there was a luminaria ceremony, where luminarias were lit in honor of cancer survivors and in memory of those who died of cancer. There was a lighted luminaria with my name on it, but unfortunately the other names we submitted (a grandfather and a great-aunt who died of cancer, and a good friend who is surviving cancer) did not appear. (The volunteers were horrified and apologetic.)

There was plenty of food and entertainment to keep us going (and spending money) until the weather cut things short. We didn't get to walk all night long and wear ourselves out (which is good, since I caught something nasty, and I need to rest because my ability to fight it is compromised), but my little team was able to raise around $900 for the American Cancer Society. I really appreciate the outpouring of support that I have received from family and friends, who were generous with available time, money, and participation.

Thursday, May 04, 2006

Between a Rock and a Rock

I passed my neuro tests yesterday with flying colors: "an A+", they said, plus extra credit for being able to walk on my heels with backless wedgies on! Considering the nature of the tests (which always make me feel like I am on an episode of COPS), I am also officially sober (which is no surprise, considering that I have never had a drop of anything that would make me otherwise)! I was poised and ready to start my next 5-day blast of high-dose chemo.

This morning it was called off. I got the results of my blood tests. The chemo has finally attacked my bone marrow (a common side effect), and my white blood cells and neutrophils have dropped below normal ranges (WBC=2.8/should be at least 4; ANC=1456/should be at least 1500), putting me at higher risk for infection. I was told to practice good handwashing and avoid obviously sick people as my primary precaution. And I can't start my 5-day chemo dose this month until things improve. We'll check again next week, in the hopes of being able to start then.

This is one of those "between a rock and a rock" moments that my doctor told me about a while ago, when we discussed the possibility of this very scenario. I asked about the risks of postponing chemo treatment, and she said that the alternative is an imminent threat of dying from a serious infection. Between a rock and a rock. Deal with the immediate threat as best as we can, and then we'll go back to the other threat (which hopefully won't have increased in urgency in the meantime).

Well, you know, in the Sermon on the Mount, Jesus warned against using vain repetitions in prayers. I know that doesn't mean you can't sincerely ask for the same stuff over and over again, but I like the fact that this gives me some new material to keep things fresh!

And hey - gotta look at the good possibilities: considering what happened to my bone marrow, hopefully this means that the cancer cells in my brain are in even worse shape!