Monday, December 25, 2006

Christmas Gifts

Merry Christmas!

We had a wonderful Christmas day, as I hope everyone has. Just being able to celebrate Christmas again was a big gift for me. My husband said that my latest "good" MRI results were what he was really hoping for most this year. Everything else was gravy on top of this, and there was a lot of it. Actually writing that just reminded me of A Christmas Carol, when Scrooge tries to dismiss Marley's ghost as a bad dream caused by indigestion and says, "There's more of gravy than of the grave about you, whatever you are." In my own way there is more of gravy than of grave about me right now, and I couldn't be happier.

We sat in our warm, comfortable home, opening presents and enjoying our children's reactions, eating good food, and spending some fun time with family and friends. We couldn't have asked for more. And after pondering my twelve days of Christmas and the many other blessings that "the good Lord gave to me", the natural question surfaced: "What should we give in return?"

Certainly teaching our children about the true meaning of Christmas is the very least we could do. Our son eagerly helped us this year with our traditional Angel Tree service project; something we started six years ago when we "adopted" a Salvation Army Angel Tree child who was the same age as the baby we lost earlier that year. We do it every year: this year the baby would have been six, so we chose a six-year-old Angel Tree boy and sent our son on a mission to find toys that would be enjoyed by "another boy a little older than you who needs some toys". On the way into the store, our son also begged for money, but not for his use in the candy dispenser right inside the store, like always. Instead, he wanted it for the "man with the bell and the red bucket" (the Salvation Army volunteer collecting donations). For his sister, he chose some of his own toys that he outgrew, which he thought she would especially like. And some others he put in a box for a family friend who was traveling to Mexico to deliver clothes and toys to needy children. And then he melted my heart as he grinned and handed a Christmas present to me: a note telling me that I could have his race car -- one of his favorite toys of all time. As it turns out, the gift is intended to be more about his sharing it with me than actual title transfer, but his thoughtfulness in giving up even partial ownership with something so dear to him was touching.

My husband and I have a tradition of giving each other at least one gift that cannot be purchased. It is always the hardest gift and the most precious, because it is a real "gift from the heart". My gift to him this year was the reading (and re-reading) of Dr. Laura's The Proper Care and Feeding of Husbands, and taking good notes and making some hopefully noticeable changes in our home as a result. (He said he did notice.) His gift to me was a square of tile from our garage, and the promise that on his next "flex day" (he has every other Friday off) of the new year, he will finally install the master bathroom tile that we bought earlier this year as our first home improvement project in this house. It's like the ultimate "honey-do" assignment, and he knows how much I like having nice master quarters. (One Christmas his gift to me was the deep cleaning of our master bedroom every Saturday throughout the year.)

The gift of service also comes to mind, because "...when you are in the service of your fellow beings, ye are only in the service of your God..." (Mosiah 2:17) and "...inasmuch as ye have done it unto one of the least of these my bretheren, ye have done it unto me..." (Matthew 25:40). In addition to our Angel Tree tradition, we also have a six-year-old tradition of visiting and caroling on Christmas Day, in places where others may need companionship and cheer. This year we joined with some family and friends and went to a nearby home where several seniors lived with a nurse, and they were without much in the way of visitors or plans on Christmas Day. After that, we went to the local VFW post at the suggestion of a friend and co-worker, who is the commander of that post. Our final stop was a nearby nursing home. It was a fun experience to make new friends, and because I am both alive AND able to sing, it meant a lot for me to celebrate my gifts of time and talent by sharing them with others.

But finally, as I gazed upon the tiny white stocking that we hang every year on our Christmas tree as a reminder of the gift that we should give the Lord in honor of the birth of Christ and in return for our blessings, I remembered something that I read earlier in the year. It was written by Elder Neal A Maxwell, an apostle in our church who died in 2004 after a long and valiant battle with leukemia. Basically he wrote that there is only one thing we can give the Lord that doesn't already belong to Him in the first place. We could consecrate all of our time, talents, and blessings back to Him in various ways, and that would certainly be a very good thing to do. But we would just be returning back what He gave to us in the first place. The only thing that we really have, that would be a true gift to the Lord would be the submission of our own free will to His ways. Our will is the only thing that is personally and wholly ours. And once we realize that His will and ways are meant for our ultimate happiness anyway, it becomes easier for us to give this gift. One of many blessings I received this past year has been the reinforcement of what I already knew to be true: the Lord is worthy of our complete trust, and we are much safer and happier (regardless of our circumstances) if we "let go and let God" take over our lives.

Sunday, December 24, 2006

On the twelfth day of Christmas

On the twelfth day of Christmas, the good Lord gave to me...

...twelve months a-living
...eleven loved ones feasting
...a "10" for a husband "nine-year-old" favorite story
...eight hours of sleep book group buddies
...six hours of (good) sleep
...five Messiah solos (and one duet)
...four Mighty Oakes
...three Hallelujah cheers
...two chemo drugs
...and an MRI with good news we could see!

Not to sound grim, but I know that none of us is guaranteed to be here for the next twelve minutes, let alone the next twelve months. (And that's regardless of whether one has a cancer diagnosis.) Each day is a gift, and we don't know how many we will receive, so each day should be regarded as priceless and possibly rare.

I have been blessed to enjoy many more days than others with my diagnosis. Twelve months and still going -- the Energizer Bunny in me is doing okay so far. And as I have said in earlier posts, I am not just maintaining a pulse. I am living, thanks to the merciful and miraculous preservation of abilities and opportunities. Thanks to (expensive but) top-notch medical expertise and innovative technology. Thanks to loving supporters who have showered me with countless acts of kindness, words of encouragement, and prayers that have been heard, recorded, and answered in wonderful ways. And most of all, thanks to the One who hears and answers those prayers.

On the eleventh day of Christmas

On the eleventh day of Christmas, the good Lord gave to me...

...eleven loved ones feasting
...a "10" for a husband "nine-year-old" favorite story
...eight hours of sleep book group buddies
...six hours of (good) sleep
...five Messiah solos (and one duet)
...four Mighty Oakes
...three Hallelujah cheers
...two chemo drugs
...and an MRI with good news we could see!

In one day we were able to have two Christmas "eve-eve" dinners: we hosted a turkey dinner for our local missionaries before going to a family dinner at my dad's house, featuring a ribeye roast that he slaved over for hours. In total, we shared a table (or two) between myself, my husband, my two children, two missionaries, my dad and stepmom, and two brothers and one sister-in-law who were visiting from out of town. If I added correctly (neuro test?) it comes out to eleven happy people feasting on good food and good companionship.

A long time ago I decided to remember to give thanks for always having food on our table and the things that we need. And when it comes to love and friendship, it looks like we have an abundance there, too.

The day before, I received some very generous gifts from friends that I work with. In addition to my own business, I have a position with a really wonderful company whose CEO is someone I worked for many years ago and was happy to work for again. His immediate reaction to my cancer diagnosis last year was, "We'll go through this together," and he and his family and the other members of the company "family" have been very kind, supportive, and helpful -- not to mention patient -- as I have gone through this crazy year. Our family was invited to come to the office for a Christmas luncheon, and when we arrived, the CEO first presented gifts for my children that made their eyes pop out with glee. It was a Mastercard moment: "Look on kids' faces = priceless". And then we received a very generously stuffed envelope, consisting of donations that all of the employees contributed for our family; something they decided to do instead of their traditional gift exchange. The board of directors also chose to participate, so there was a generous check in the envelope along with the other donations. It was a very kind thing to do, and in addition to the love and support that it symbolized, it served a very practical purpose. We had just received a staggering medical bill, despite our very good health insurance. It was a lousy time of year for this to happen, but it became much easier because (as always) the Lord will provide according to our needs, and sometimes that is accomplished through the kindness of good people.

Being stuffed with two dinners in one day was symbolic of how abundantly we have been blessed in so many other ways, including the blessings of good family and friends.

Saturday, December 23, 2006

On the tenth day of Christmas

On the tenth day of Christmas, the good Lord gave to me...

...a "10" for a husband "nine-year-old" favorite story
...eight hours of sleep book group buddies
...six hours of (good) sleep
...five Messiah solos (and one duet)
...four Mighty Oakes
...three Hallelujah cheers
...two chemo drugs
...and an MRI with good news we could see!

I've had this gift within the privileges of holy matrimony for a little over eighteen years and seven months. I've been in love with this man since November 1982 (a little over 24 years and one month), and for many good reasons.

I know this public praise brings on the risk of making him an even hotter property if he should ever find himself a widower with kids who need a stepmom, but that's all the more reason for me to try and hang around as long as I can.

The scriptures tell us that we should " together in love, insomuch that thou shalt weep for the loss of them that die..." I think we've met that requirement. My husband had two cancer scares before I was diagnosed, and I remember the awful pain of realizing that our mortal separation (albeit temporary) was actually possible. I pained as I considered him having to go through a cancer battle, and I wept with relief when the biopsy results were negative. I had no idea that while this was going on, I was not far from starting my own cancer battle and putting my husband through those same awful feelings. I had no idea what he would have to bear for me and our family, but I have never been surprised by the strength and grace in which he does it.

This was not the first proving ground. There have been many other opportunities for me to marvel at how well I married, when I was just a silly young girl with a huge crush on this tall boy who danced with me and became my best friend.

I still remember conversations I have had with my parents, as they have each expressed their heartfelt gratitude for such a good husband for their only daughter. I still see on a daily basis how our home lights up when he comes in the door after work. He is not only a good husband, but he is a good father to our children. My daughter looks at me narrowly as "not Daddy." My son begs to know when Daddy will be home so they can play together. Even the dog is happy to see him, because he is the one to always check, "Did Chip get fed?"

The one who always takes out the trash. The one who has cleaned out the fridge more times than I have. The one who balanced on a very tall ladder to hoist a decorated Christmas tree up to the second-story ledge overlooking our entryway (while I napped). The one who teaches my son to "open the door for Mama." The one who changes diapers, cleans throw-up, juggles wiggly kids in church. The one who notices when I do something different with my hair and who calls me "gorgeous" at times when I know he must surely be saying it with a huge "love lens" over his eyes. The one who sings with me, plays with me, and (when the mood strikes and I give him my "Bambi eyes") will drag in the masonite floor from the garage and put on his tap shoes and dance with me.

We have many pet names for each other (we are still so squishy in love) but the one I call him most is "my Jared." I am his, and he is mine, and he is a very special gift that I enjoy every day, but he especially comes to mind at the mention of the number "10" ('cause he's such a "10") on the tenth day of Christmas.

Thursday, December 21, 2006

On the ninth day of Christmas

On the ninth day of Christmas, the good Lord gave to me... "nine-year-old" favorite story
...eight hours of sleep book group buddies
...six hours of (good) sleep
...five Messiah solos (and one duet)
...four Mighty Oakes
...three Hallelujah cheers
...two chemo drugs
...and an MRI with good news we could see!

Today my son's kindergarten class dismissed at noon for a two week break. His ability to go to school was doubtful last night, as he was really sick with fever, headache, and nausea. But this morning he was feeling much better and he eagerly dashed off to class pain-free, fever-free, and with a healthy appetite. I picked him up after school and took him to the doctor anyway, and it turns out that he has a nasty ear infection, so he gets antibiotics as an early stocking stuffer. And then I decided to reward his good day at school and his bravery at the doctor's office by taking him to see Charlotte's Web. It was one of my favorite stories when I was about nine years old, and I have plans to read it to my son after we finish reading A Christmas Carol.

It was a good movie portrayal of the beloved story, and my son liked it very much. I found myself relating to the happy circumstance of Wilbur seeing his first snowfall, when most spring pigs do not get that chance. It reminded me of the grim odds of my seeing this year's Christmas, and the happy circumstance of being one of the lucky ones who is still here. And I found myself hoping to someday become like Charlotte when I heard, "It is not often that someone comes along who is a true friend and a good writer. Charlotte was both."

My son was naturally saddened by Charlotte's death, pointing out that she had so many young babies. I was saddened, too, and hoped I wouldn't have that in common with Charlotte. But my son and I both expressed our appreciation for the story's reminders about miracles in the everyday things of life.

As the credits rolled at the end of the movie, we listened to Sarah Mc Lachlan sing "Ordinary Miracle", which summed up the message beautifully:

It's not unusual when everything is beautiful.
It's just another ordinary miracle today.
The sky knows when it's time to snow.
Don't need to teach a seed to grow.
It's just another ordinary miracle today.
Life is like a gift they say, wrapped up for you every day.
Open up and find a way to give some of your own.
Isn't it remarkable that every time a raindrop falls
It's just another ordinary miracle today.
Birds in winter have their fling, but always make it home by spring.
It's just another ordinary miracle today.
So when you wake up every day, please don't throw your dreams away.
Hold them close to your heart,
'Cause we are all a part of the ordinary miracle.
Do you wanna see a miracle?
The sun comes up and shines so bright,
But disappears again at night.
It's just another ordinary miracle today.

It reminded me of an Albert Einstein quote: "There are two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." The cancer glasses sure magnify the latter way of living, and it is a very good thing.

It also reminded me of a song I sang nearly a dozen years ago in a local musical production at our church, part of which goes like this:

Some may see a rainbow as nothing more than light;
Others see a promise and a sign.
Everyday wonders, without number,
Are here all around, and wait to be found
By those who have eyes to see.
For the power of God is plain to see.
There are wonders on every hand
To those who will see through eyes of faith,
Beyond the mind of man.
For how could we hope to see His face
Who never could see His hand?
("The Power of God" by Steven Kapp Perry, from From Cumorah's Hill: The Book of Mormon Speaks to Our Day)

It was fun to talk with my son today during our drive home, about the daily miracles in our lives. How our being born was a miracle. How we all came to be a family, and how we love each other. How he went from being a tiny baby to a five-year-old who is capable of doing so many things. How we had some time together and how we both felt well enough to see this nice movie together.

Maybe the appeal that Charlotte's Web had for me as a nine-year-old was a foreshadowing of this very precious moment that my son and I would share today as my gift on the ninth day of Christmas.

Wednesday, December 20, 2006

On the eighth day of Christmas

On the eighth day of Christmas, the good Lord gave to me...

EIGHT hours of sleep (???) book group buddies
...six hours of sleep
...five Messiah solos (and one duet)
...four Mighty Oakes
...three Hallelujah cheers
...two chemo drugs
...and an MRI with good news we could see!

Okay, my second "day of Christmas" that mentions getting some sleep!

The kids have long been sound asleep (sadly, our night owl son is asleep early because he is sick) and my dreamboat husband cleaned up the kitchen after dinner and I got some things off my "to do" list today and so I am actually ready to unwind and catch up on a full night's sleep! Can my body handle the shock? It'll be cool to find out!

Tuesday, December 19, 2006

On the seventh day of Christmas

On the seventh day of Christmas, the Good Lord gave to me... book group buddies
...six hours of sleep
...five Messiah solos (and one duet)
...four Mighty Oakes
...three Hallelujah cheers
...two chemo drugs
...and an MRI with good news we could see!

Today was our annual book group Christmas party, which is always a real treat! I had to miss it last year, and I didn't know if I'd survive to see this year's party, so I was really glad to be there.

We have the best book group, and the only things we really have in common are that we go to the same church, and we like to be in a book group. (And we all love the annual Christmas party.) Beyond that, there is diversity in everything from life stage and situation to even the types of books that we like to read. It makes for great book selections and discussions, and it has also formed some wonderful friendships.

Our annual Christmas party is usually hosted by the same person. We always keep it a simple affair: bring something to eat, and bring a wrapped book for the book exchange. We sit around the table and snack and gab, and we play the gift exchange game where we each get to choose a book in turn, and we can choose to "steal" one that has already been selected and opened, or we can choose a new one from the pile. We also have to guess who brought the book.

Unlike our other monthly meetings, this is the one meeting each year where we don't actually have an assigned book to read and discuss. The conversation is usually just really fun and random. This time it ended up with each of the married women in the group sharing the story of how they met and married their husband. I always love those stories - I love sharing my own, and I am always fascinated to hear how other couples came to be. It was a lot of fun, and before we knew it, we had used up the evening and then some.

The mailing list for our group is actually quite large, and it continues to grow, which makes it even more fun. But tonight there were eight of us gabbing and snacking and opening books around the table. Me...and seven of my book group buddies on this seventh day of Christmas.

Monday, December 18, 2006

On the sixth day of Christmas

On the sixth day of Christmas, the Good Lord gave to me...

...six hours of sleep
...five Messiah solos (and one duet)
...four Mighty Oakes
...three Hallelujah cheers
...two chemo drugs
...and an MRI with good news we could see!

Yeah, I've been hyper way into the late hours of the night, and I've been awake far too early in the morning. I must be yearning for my "brain on steroids" days last year, when I was writing articles and my book while recovering from brain surgery. But I finally had a good six-hour stretch that was good quality if not good quantity of sleep!

On the fifth day of Christmas

On the fifth day of Christmas, the Good Lord gave to me...

...five Messiah solos (and one duet)
...four Mighty Oakes
...three Hallelujah cheers
...two chemo drugs...
...and an MRI with good news we could see!

Yesterday's Messiah event was a dream come true! My voice was a little rough from such a long cold, but it did fine, and I spent the whole time just marveling that I was actually singing in a theater instead of being dead (or barely alive and unable to process music). It was a miracle and a joy. As a special bonus, as everyone stood and sang the Hallelujah chorus, my son stood and tried his best to sing along. As I watched him, I noticed that even at the young age of five, he looked like a little chorister in a boys' choir. His mouth was in perfect position: jaw dropped, corners in, etc., like a trained singer! (I guess the acorn doesn't fall far from the tree!) It was an extra treat.

My husband and I did our duet of "O Death, Where is Thy Sting?", like we did at Easter time, and it is especially poignant (or morbid - whichever) to sing that together under our circumstances. I was also able to sing "Behold, A Virgin Shall Conceive", "O Thou That Tellest Good Tidings To Zion", "Then Shall the Eyes of the Blind", "He Shall Feed His Flock", and "He Was Despised". Five favorite alto arias and recitatives. It was fun. I also got to have a cool mike taped to my face. It's very cutting edge theater technology and it's fun.

I'm so grateful to those who came and supported the performance, and I was delighted to hear that there are plans to do it again next Christmas, perhaps even with orchestral accompaniment. I have plenty of other reasons to try and be around for next Christmas, but it's nice to add more!

Saturday, December 16, 2006

On the fourth day of Christmas

On the fourth day of Christmas, the Good Lord gave to me...

...four mighty Oakes
...three cheers of "Hallelujah"!
...two chemo drugs
...and an MRI with good news we could see!

It's always nice on Saturday mornings to have some hang time as a family. We are four "mighty Oakes" (two parents and two "acorns") who have withstood some mighty storms by banding together.

We have a little family anthem that we made up during a road trip:

We are, we are, we are, we are,
We are the Mighty Oakes!
There's Mommy, Daddy, Jacob, Emma -
We are friendly folks!
Two parents and two acorns,
We're happy as can be -
We are the Mighty Oakes
And we love our family tree!

Friday, December 15, 2006

On the third day of Christmas

On the third day of Christmas, the good Lord gave to me...

...three cheers of "Hallelujah!"
...two chemo drugs
...and an MRI with good news we could see!

Hallelujah!!! It looks like Messiah is back on! I did contact the folks at the Artisan Theater to explain how much this has meant to me and the rest of the cast, and they are now quite apologetic and willing to proceed!!! Assuming that the rest of the cast is able to jump back on board, we're good to go Sunday night!

Part of my campaign to resurrect Messiah (bad pun) included mention of the many invitations I have extended to family and friends who are planning to come. I hope to see a good turnout, with everyone who is reading this in the North Texas area!

I am SO excited to have this opportunity to celebrate the preservation of my life and my talents throughout this year. My sore throat is finally going away, and my joy is at its zenith again - I guess I need to watch out!

Thursday, December 14, 2006

On the second day of Christmas...

On the second day of Christmas, the Good Lord gave to me...

...Two chemo drugs

...and an MRI with good news we could see!

Yes, today was the long toxic drip of Avastin and Carboplatin. I should clarify that "toxic drip" is meant as a reference to the devastating effect it has had (and hopefully will continue to have) on the tumor cells...and just the tumor cells. It's not exactly a picnic for the rest of my body, but it's been more tolerable than I expected. And based on yesterday's results, it's doing a great job so far!!!

I brought my laptop and did some work while the IV pump churned, and I was able to drive myself home after several hours of infusion (and an eternal wait for the mandatory valet parking to deliver my car). I met some more wonderful people who came to the chemo clubhouse. As always, the oncology staff was great, and there were so many nice patients and family members passing through, and it was such a lousy reason to be meeting each other. But there are always blessings in every circumstance, and these people are part of the blessing.

And likewise, sometimes the good comes with some opposition to help us appreciate the contrasting goodness of our blessings. I remember a quote from the hilarious movie, A Christmas Story, where Ralphie (grown up) recollects: "Sometimes at the height of our reveries, when our joy is at its zenith, when all is most right with the world, the most unthinkable disasters descend upon us." (This is right before the neighbor's dogs invade their house on Christmas day and eat the turkey that just came out of the oven.)

I'm still on my high from yesterday's MRI results, but upon arriving home this afternoon I discovered that there is a yin to the yang in this news. I got some disappointing news today, but thankfully it isn't anything about my health or my family or anything like that. It's about Sunday's Messiah performance.

It has been canceled by the owner of the Artisan Center Theater, for reasons unexplained. It is a huge disappointment, as many have worked hard on this. Our director even went to great lengths to arrange for a substitute director, because her husband just passed away. She worked hard through her grief to make sure that "the show must go on" in her absence, and so to have it canceled anyway (with no explanation) is just a nasty blow to her while she's already injured. For me, this was an opportunity to celebrate the blessings of my life and my talents being preserved, and I could think of no better way to do it than by singing these beautiful praises to the Messiah Himself. It was such a joy to sing last Easter, and I was thrilled by the invitation for another chance to sing this great stuff again (without having to wear angel wings and stand on a cloud). It is a miracle to be alive and singing (my cold is even starting to shake loose), and it's a shame to lose the chance to share this miracle with the many family and friends who have cheered me on throughout this battle.

I have half a mind (literally) to stomp around and scream about it and call the theater owner and rant and rave about this terrible shame. But I won't, of course. (Not very Messiah-like, and we should at least try to follow His example.) I've decided that it will just be another good reason to live long enough to see another Messiah opportunity come around. Maybe this Easter again. Maybe next Christmas. It'll be all the more miraculous if and when I do have a chance to sing again. Meanwhile, at least I still have half a mind, and that half can sing. (Just not at the Artisan Theater this Sunday - boo!)

And really - if there had to be both good news and bad news happening this week, I'm glad it turned out this way instead of the opposite (like a great Messiah performance ending up being my swan song because of devastating tumor spread). So I'm having my "aw, Shucks" moment but I'm realizing that this disappointment doesn't come close to a "yin-yang" balance of equal weight, and it's hardly "the most unthinkable disaster." It's just a bummer, and one that I'll gladly take, considering the selection of "bummers" that could be out there for me.

I know that there were family and friends planning to come and hear me sing, and I appreciate that desire to support me. Since that opportunity is gone for now, I have an invitation open to people in the North Texas area who wish to join us for a singing service activity on Christmas afternoon. For those who read my little blurb in the Ensign magazine, you'll know a little bit about this family tradition of caroling and visiting with people who are lonely at Christmas. And we'll probably end up at my house afterward for wassail (full of anti-oxidants) and nibbles. Anyone who wishes to participate may contact me by leaving a comment with your email address, or by emailing me directly if you know how to do that**.

**(k r i s t a o a k e s a t g m a i l p e r i o d c o m o r k o a k e s a t a m i c a s o l u t i o n s p e r i o d c o m i a m d o i n g t h i s t o h e l p k e e p s p a m m e r s a w a y : ) )

Wednesday, December 13, 2006

On the First Day of Christmas...

On the first day of Christmas, the Good Lord gave to me... MRI with good news we could see!!!

It was amazing, looking at October's scan with the splotch on it, and then looking at today's scan, where the splotch is now nothing more than a tiny hairline mark. It was a dramatic reduction of the tumor, and a very good result. My doctor was almost giddy as she showed this to me.

It was a fun day. I had a good night's rest last night, and I woke up feeling calm about this. As always, I felt the supportive power of the many prayers offered on my behalf. My appointment schedule was less than desirable; I had my scan in the morning and then I had to wait a couple of hours before I could meet with my doctor to get the results. Luckily, I had my good luck charm with me (my husband) and it so happens that the MRI place is right next to Dallas' famous Northpark Mall, so we did a little window shopping to keep my mind off what may or may not be (literally) on my mind. And then when I finally had my appointment, my doctor was mercifully quick to deliver the good news. I felt like someone at a fertility clinic who just got a positive pregnancy test, the way she and all the nurses and staff were congratulating me.

I'm not "done", of course. I still need lots of prayers. I learned that while this is a great result, it is not known how long it will continue to be effective. It is an experimental treatment that has had promising results like this, but it has only been studied for a few months. In any case, though, for now we get to relax and savor a season of joy.

Tomorrow I go in for my toxic drip, and although it isn't my favorite thing to do, it's nice to know that it really is doing me some good.

Tuesday, December 12, 2006

Happy Birthday

It's not really my birthday. Every neuro test starts out with "what day is it?" I'd pass that part today: it's December 12. The anniversary of my craniotomy and cancer diagnosis. The milestone that only a minority of glioblastoma patients get to celebrate.

Lance Armstrong marks the anniversary of his cancer diagnosis date, by saying that it was the day he "started living". So I guess it's kind of a birthday of sorts.

December 12, 2005, was not the day I started dying, although it surely gave me a big heads-up that mortality was hovering over me. Not to sound too grim, but we all started dying as soon as we were conceived. We were all born, and we will all die someday -- we just usually hope it will happen later rather than sooner.

December 12, 2005, was the day I started living. I awakened from surgery to the news that the tumor was malignant. It was a strange time. When I first woke up I wasn't sure they'd even started surgery yet, until I felt the big bandage on my head. And then in that initial fuzzy state I (unknowingly) tortured my husband with repeated questions about the biopsy results. It pained him to tell me again and again: malignant. I also remember being thirstier than I'd ever been before, and I would beg the nurse to just squeeze a drop of water into my mouth, and she would angrily refuse, saying I'd throw up if she gave me anything to drink. I started getting feisty, and I guess that feisty spirit has been good for me ever since. Within a couple of hours I was cracking jokes and talking about an episode of one of my favorite television shows. I recognized every person who met with me and talked with me on the phone. I talked shop with clients who came by, and remembered every detail of each project. It felt good to know that generally speaking, I was still "me".

I also knew at the time that "malignant" had a range. It was a couple of days before I would know the tumor staging, so I only felt an initial disappointment that - okay - I guess I won't make it to the century mark. My husband and I won't die together in our sleep, holding hands, while our octogenarian children are being visited in their nursing homes by their great-grandkids. Bummer. But I figured, hey - if the tumor is at a stage that gives me a decade or so, they'll probably have better treatments or a cure by the time I need them. I'll still dance at my kids' weddings. No biggie. It was easy to wave away any thoughts of catastrophe, especially considering the sedatives that were coursing through my veins at the time.

It was a couple days later that I got the big blow: grade four glioblastoma. Typical prognosis anywhere from less than a year to maybe a little longer. Once in a while someone very exceptional hangs in there for a few years. Favorable conditions were my age and the tumor location. My neurosurgeon looked so sorry as he delivered the pathology results.

I remember lying in my hospital bed, digesting this terrible news and weeping. One year to live...maybe. What would I do with that year? And how much of that year would I actually spend being functional, while my brain is eaten away by cancer? When would I become paralyzed or blind? When would I lose my ability to work, lose my personality, forget who my kids are? When would music (a favorite pasttime) become foreign? When would I become scary and disturbing to my family? When would I reach the point where people would discuss what a blessing it was for me to finally pass on, after so much suffering and disability? My imagination conjured up many horrific scenarios.

So what did I do with that year? I lived!

I worked. I sang. I wrote a book and a couple of articles while recovering from brain surgery. I blogged. I loved. I traveled. I clog danced. I played. I made a huge mess in my office. I helped my son learn to read. (To name a few.)

One year later, I can finally chew gum and eat "tall" food again. My jaw finally stopped hurting from the surgical incision.

One year later, I still have more hair than my husband. Some of the mange has grown back.

One year later, I can still count backward from 100 by sevens really fast.

One year later, I sightread music better than I used to.

One year later, my lifestyle is much more normal than I expected it to be.

One year later, everything has become more delicious and miraculous.

One year later, the only thing that could threaten my Messiah solo this weekend is a nasty cold (assuming tomorrow's MRI results don't warrant an emergency craniotomy).

One year later, I am in the midst of a new battle, and tomorrow's MRI will tell me how that is going. But I survived disappointment and avoided discouragement following October's news of tumor recurrence.

One year later, I am here...
...thanks to the favorable conditions of age and tumor location...
...thanks to prior tragedies that identified and prevented potential complications...
...thanks to easy access to good expertise and state-of-the-art treatment...
...thanks to the lifting of daily cares by kind and generous friends...
...thanks to kind employers and clients, who have supported us in numerous ways...
...thanks to family and friends who have surrounded me all year with love, laughter, help, and priceless memories...
...thanks to my husband and children, who provide a constant motivation to stay here...
...thanks to the outpouring of faith and prayers of so many, which have opened doors for miracles and sustaining strength...
...thanks to a loving Heavenly Father, whose good will has been to keep me here for now, and whose plan for me (whatever it may be) is known to be of loving design; and...
...thanks to a Savior, whose priesthood is here for my benefit, and whose sacrifice makes it possible for me to ultimately overcome even the worst that glioblastoma can do to me.

Despite the processes of cancer diagnosis and treatment, and despite staring mortality in the eye every day for the past twelve months, this one year of living has managed to be at least as rich and full and joyous (if not more so) than the nearly four decades that preceded it. So if I can find a way to stick a candle on a Sucrets lozenge, maybe I'll have a little birthday celebration today.

My second year of living (hopefully a full one) will kick off with tomorrow's MRI, so lots of prayers are needed and appreciated. (I'm already hearing a drumroll in my head...)

Thursday, December 07, 2006

Let Them Eat Cake

A friend called my husband and told him about a neat Newsweek article on (and I also noticed a blog comment about it, too):

It's exciting to see so much research and innovation being devoted to this type of cancer. I had to fight back feelings of envy while reading about the featured neurosurgeon from Houston with glioblastoma, who has been without a recurrence for 18 months (twice as long as I went). His treatment involves a vaccine that is unavailable to me, because my tumor site was "contaminated" by the chemo wafer that they put in my brain, and a vaccine cannot be made from it. (Although the wafer was the state-of-the-art approach at that point.) I hold it as my emotional "trump card" - something positive to consider if my MRI next week shows any new tumors that call for more surgery. The newly removed "fresh" tumor might be usable to make a vaccine (assuming I have the right gene receptors for the vaccine to work, as described in the article).

As with all reports of promising developments, the good news is placed in the context of contrast with the grim realities.

"More than two thirds die in a year...", it quotes from the Central Brain Tumor Registry. (Not sure what the Central Brain Tumor Registry is. Is it like a gift registry? Do I get to pick out the china pattern for my hospital dining?)

More than two thirds die in a year. The anniversary of my surgery is coming up on Tuesday. If I make it that far I'll be in the lucky 33 percent who see their anniversary. I hope that today's technology will keep me going beyond that point, until the next promising development becomes available. And then maybe that can keep me going until the next, and so on.

The article also attempts to describe the challenge of glioblastoma with an analogy to marble cake: "Glioblastomas are among the most lethal tumors, because they are resistant to both chemotherapy and radiation. Worse, they send out microscopic tentacles that seed other areas of the brain with individual tumor cells. Even if a surgeon can remove the main mass of a tumor, he cannot possibly excise all these scattered cells. It would be like a chef trying to remove the marbling from a marble cake—and get every last crumb. These additional cells generate new malignancies, sometimes within weeks of the initial operation." Such statements are disheartening until I remember that this is "arm of flesh" talk. Even though it might be based on available science and history and therefore seem to be easily reliable information, it is counterproductive to the exercise of faith.

It's like when I was going through infertility treatments and my brother was learning about embryology in medical school. His comment, as we both discussed our increased understanding of how the conception and gestation processes work and what challenges they face, was that "it's a miracle that anyone is ever born." It's true. Having looked at reproductive science from a closeup view, it was staggering to me to realize how the life process, from its earliest beginnings, is already subject to death. Birth itself is a miracle. Each day of life is a miracle, cancer or not.

So here I am, not only still alive as I approach a milestone that puts me in a statistical minority, but I'm still able to do more than just maintain a heartbeat. I feel like Rush Limbaugh, doing so much "with half my brain tied behind my back."

This month our church magazine, the Ensign, features a little blurb that I wrote during my "brain on steroids" days following surgery. (You can see it on in the Gospel Library section - Ensign December 2006 issue, in the "Questions and Answers" article.) Next Sunday, the 17th, I am scheduled to sing Messiah again at the Artisan Center Theater in Hurst, Texas. (And it's free, so come and hear me if you're in the area.) Unless my MRI on the 13th forces me into an emergency craniotomy, and as long as I can finally get over my cold, I'm looking forward to a dream performance.

This is much better than what "the arm of flesh" would have predicted at this point. It's a miracle, made possible by the faith and prayers of many on my behalf.

Makes me want to get a marble cake and celebrate.

Monday, December 04, 2006

More Than Winter

"Happy Frickin' Winter."

This gave me one of the biggest laughs I'd had in a while, which is good because I've had a nasty cold and lowered white blood cell/neutrophil counts, and humor is good for the immune system.

This came from Glenn Beck's website. Glenn Beck is one of my favorite radio talk show hosts, and he also has a primetime spot on CNN Headline News. He is not only a fellow Mormon, but also a fellow adoptive parent. And he is hilarious. One year we bought his "Happy Rama-hanu-kwanz-mas" t-shirt, and now he has a greeting card depicting a father and son who go out shopping for Christmas trees, and the tree lot has a banner that says, "Christmas Trees", with "Christmas" crossed out with "Holiday" replacing it, then "Holiday" crossed out and "Winter" replacing it. Inside the card has the hilarious punchline with a good point: "Happy Frickin' Winter." It was a great way to capture the absurdity of the devolution of "the most wonderful time of the year".

Growing up and attending elementary schools in Illinois, I remember learning Christmas songs (yes, even the Jesus ones) and Hanukkah songs, and making manger scenes as well as dreidles - IN PUBLIC SCHOOL. (Someone in the ACLU is hyperventilating right now.) My civil liberties remained intact. I remember thinking it was pretty neat to learn about what my Jewish friend celebrated, and I never once felt like my own Christian faith was threatened. Looking back, I think that if anything fostered acceptance and tolerance of diverse faiths, it would be the "free exercise" of those faiths. (A little constitutional lingo, there.)

As time passed, I noticed that later years took out the religious parts of the holiday season, and the schools focused on Santa, Rudolph, and the like. Now the holiday part is completely removed, and my son makes snowmen in school and looks forward to "winter break". The biggest tradition of the season is Black Friday, the day after Thanksgiving when crowds wait all night outside store entrances for the big doorbuster deals. (Okay, as a shopping nut, I can't honestly criticize that activity, but I wish there were more religious fervor directed toward better things.)

As an unofficial member and fan of P.O.O.P. (People Offended by Offended People), I can only give a tongue-in-cheek observation that "Happy Winter" celebrations are not politically correct enough. After all, isn't it "seasonist" and offensive to people (like me) who were born in the summer?

By the way, I do have to mention that my son's elementary school did have a Scholastic book fair early in the semester, and I was incredibly (and pleasantly) surprised to see how many Christmas (yes - even Jesus Christmas, not just Santa) and other religious books were offered for sale IN THE PUBLIC SCHOOL BOOK FAIR! (Another ACLU person hyperventilates.) I personally bought as many as I could afford, as a show of support.
The reason I share this viewpoint is that I was contemplating the upcoming Christmas season, and hoping that this year it would bring good news (my next MRI is on the 13th) instead of the devastating news of my cancer diagnosis last year. I worried so much that I ruined Christmas once for my family by creating a negative association, and I didn't want to do it again. Of course, my Prince Charming husband refuses to let me think that I have the ability to "ruin" anything, and my mom always insists that every day we are all breathing is a gift to celebrate with gratitude (and she's right). And added to that came my own realization that this more than just a winter holiday. It's more than snowmen. It's more than traditions and carefree celebrations and parties and credit card bloat. Christmas is coming soon. It's the celebration of the birth of the One who makes something as awful as cancer into just a temporary nuisance in the grand scheme of things. I still hope I don't have more bad news to share at this time (or any time, for that matter), but I guess it's less than tragic to have to face the hard things of life at a time when the birth of our Savior is able to provide the context and comfort we need to deal with mortality's messes.

Having endured many Texas summers, even this July-born girl can find much to enjoy about the arrival of the winter solstice. But I am grateful to have something much more significant to celebrate. I hope I have many more opportunities to say it, but...Merry Christmas!

Sunday, November 26, 2006

I'll Take Manhattan

It shouldn't take cancer to help make dreams come true, but hey - what a fun way to make lemonade out of the lemons in our lives!

We completed another leg of my "farewell tour" with an amazing family reunion in Manhattan. My three brothers and I (with our families) and my mom celebrated Thanksgiving week together in the Big Apple. It was something my brother Jim and I talked about doing ever since he moved to New York to do his fellowship and residency, and thanks to my mom, Aunt Kay, and Uncle Andrew, the dream finally materialized in a super-fun way.

We all converged on Tuesday at the Marriott Marquis hotel on Times Square, where the twelve of us (four kids and eight adults) split three suites. It's a beautiful hotel, and I remember staying there in 1994 for a business trip, when we saw Big Bird in the lobby, because they were having the Daytime Emmy Awards there.

Everyone arrived safely, and then after hitting Sbarro's for lunch (which was funny - one of my brothers commented that we came all the way to New York City and ate "mall food"), we set out to tour 5th Avenue, with its many wonderful shops (including Tiffany's, where I - happily - did not have a seizure amidst the brilliant display of diamonds) and beautiful landmarks like St. Patrick's Cathedral. On the way back we passed by St. Thomas Church just as an evensong was beginning. Having sung with Evening Song, a choir whose name was inspired by the beautiful "evensongs" our director heard during his travels to Cambridge, I always longed to hear a real evensong myself. We stepped in and heard the choir, comprised of fifteen men and twenty-four boys. It was an unexpected delight to hear such beautiful music, and I was grateful for the ability to appreciate it.

We also hit the new Toys R Us store, which is a fantasy land that includes a ferris wheel ride. I took my son and niece and nephew on it, and it was a blast. Afterward, some of us had dinner at Sardi's that night, which was a favorite spot from a prior trip.

On Wednesday we went to Rockefeller Center, including Top of the Rock (where thankfully we did not get blown off the roof despite the wind), and then we had matinee tickets (second row, center) to see Beauty and the Beast. It was, of course, very well done, and we really enjoyed the character of Gaston, brilliantly played by Donny Osmond. He was my first crush, before Shaun Cassidy took over when I was ten years old (and before Jared took over for good when I was fifteen). I met Mr. Cassidy during a trip to NYC in 1995, and so this time we rushed to the stage exit to catch the big D-O. It cost us a hard-earned chance to see the David Letterman show, but it really paid off. I got Donny's autograph and a picture, and so that was another unexpected delight. We also had a couple of fun Seinfeld-inspired dining experiences, including the black-and-white cookie and soup from SoupMan (the place that launched the "Soup Nazi" episode). They actually have fabulous service, going out of their way to be "more soup, less Nazi", and the lobster bisque really is incredible.

On Wednesday night they inflate the balloons for the Macy's parade, so we headed up near Central Park to watch that happen. My son and I had fun taking turns with the camera, getting close-up pictures and guessing what each balloon was. It was kind of like seeing the parade up front and in reverse, and without the marching bands and Broadway dancers.

When the parade started Thursday morning, it was cold and rainy. But we stayed warm and dry, watching the parade all together from the window of one of our hotel rooms. We put the television on, and so we would see something pass by and later hear the commentary about it on TV. It was nice to have such a great view without having to sit out all night in the rainy cold. One of many things to be thankful for on Thanksgiving. We later feasted on turkey and trimmings at The View, the revolving rooftop restaurant at the top of our hotel. The abundance of good food and family was symbolic of the innumerable blessings that we have received, especially (but not exclusively) during the past year.

On Friday we ignored the traditional Black Friday shopping madness and ferried to the Statue of Liberty and Ellis Island. I brought a list of our immigrant ancestors who came from Greece, Denmark, Sweden, England, Scotland, Ireland, and Portugal, and I couldn't help but think what it must have been like for them to pass Lady Liberty and step onto Ellis Island. We also went to the World Trade Center site (Ground Zero), which is a sobering place. It was hard to explain the significance of it to the kids.

Friday was the 24th anniversary of the first date I went on with Jared. Friday was also my mom's birthday, so we wound our way back to Junior's (near our hotel) for a party with some good diner food and the best cheesecake we'd ever eaten. Then some of us went to the Manhattan temple (across from Lincoln Center). It was a really awesome day.

Saturday morning gave us just enough time for breakfast together at the hotel restaurant before we each left for home. We discussed where we might go next. (I'll have to consult my "hair list".) It would be nice to be like Cher (or McDonald's McRib sandwich) and keep having "farewell tours" over the years. This trip might not have happened this year, had my tumor been benign. There are many experiences that would have been missed, because sometimes it's too easy to forget how precious each opportunity can be, until mortality raises its ugly head. So even though it came with cancer attached, I'm glad I was able to take Manhattan.

(Come back for pictures!!)

Saturday, November 18, 2006

Seize the day...again...

...or something.

Yesterday was the closest I came to having one of my original seizures - all except the smell aura. It was sickening and terrifying. I forgot how bad those used to feel.

It may be a reaction to my chemotherapy. It may be the tumor continuing to grow despite chemotherapy. I won't know for sure until my next MRI, which will be twelve days before Christmas.

Family members flipped out. If only I hadn't been so cute and cuddly this wouldn't have to be a painful experience for others. If I'd been a little b****ier they could all be working on their "Ding Dong" chorus instead of worrying about me. (But I'll try to stay cute and cuddly just the same.)

My doctor prescribed some Benadryl and an increase in my seizure medication. It helped us have a nice family outing with my brother (Dr. Jim) who is in town for a medical conference and fellowship interview at a time that happens to be the anniversary of his saving my life. The ER doctor who treated me last year assured me that I was not having seizures and that I did not have a brain tumor, and that this would all probably go away and we could laugh about it six months later. My brother insisted that I was having "textbook" seizures that should be explored further, and he gave me the confidence to overcome my intimidation and seek further care, which led to the diagnosis and intervention of the most aggressive kind of brain tumor. Otherwise, I would not have lived six months, because the ER doctor would have killed me with his negligence. So I was happy to be able to at least treat Jim to some fajitas while he is in town. Afterward, he and my husband assisted my dad in giving me a priesthood blessing, and I had a very good night's sleep.

This experience is a reminder of all that is at stake right now: more legs of my "farewell tour", another Messiah performance, Christmas with my family, my book release, my 18+ year honeymoon, time with my children, my independence, my livelihood, my life. My very sense of security. This seizure threat makes me feel like Carol Ann in Poltergeist: "They're ba-a-a-ck!"

As I pondered and wrestled with this latest challenge, I was reminded of Viktor Frankl, the holocaust survivor whose experience is recorded in his book, Man's Search for Meaning. He was deprived of everything: material possessions, family, and security. He lived under constant threat of death as he witnessed the brutality against fellow concentration camp detainees. Yet he concluded that "Everything can be taken from a man but ...the last of the human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way."

There have been times when I wondered if my ability to keep going is at least partially based on my choice. I know that there is much beyond my control, and I know that ultimately we all die, whether we choose to or not. But I know that I do control and own the decision to "despair and die", or to hang on and hope for the best -- like the apple that has to be shaken off the branch. It is my choice whether to shake my fist at God or to take his yoke upon me so that my burden may be lightened. It is my choice whether to hide under the covers or face the monster head-on (and for those of you who are Lost fans like me, I hope I don't do it Eko-style). It is my choice whether to live poorly or live well, and whether to die poorly or die well.

Today is a new day -- a new gift. I hope that seizing the day today has nothing to do with my brain short-circuiting.

Tuesday, November 14, 2006

Neuro Test & Toxic Drip

Today was my third chemo infusion (the long one, because it is both Avastin and Carboplatin, plus steroid and anti-nausea), preceded by my monthly neuro exam.

I did pretty well with the neuro exam (100/93/86/79/72/65/58/51/44/37/30/23/16/9/2; avocado/monkey/softball, etc.) - EXCEPT that something is affecting my vision. For the first time, I was unable to see the nurse practitioner's finger wiggling in my upper left field of vision. I could tell there was a hand there, but I didn't see the finger (much less the wiggle) until she brought it down & closer. That was a first, and while she didn't make a huge deal of it, it was noted and will be followed, and it was nonetheless the first "clinical" manifestation that has shown up in a neuro exam. She also commented that one of my pupils is larger than the other, although she said she had noticed that before. No idea what all this means, so naturally I started conjuring up theories of rampant tumor spreading. Of course, I called my brother (Dr. Jim) to talk me off the ledge, and as always, he offered some plausible reasons not to worry.

My next infusion is in two weeks, and my next MRI scan is on December 13. They almost tried to get me in on December 12 (aaaagh - 12/12 - my craniotomy anniversary and those unlucky twelves!!!), but I was able to get a "luckier" date. We have no idea what the next MRI will show, and how that will impact our Christmas plans, but I was told that the last four patients who have been using this protocol have seen good results, including shrinking of the tumor. So I hope and pray that I can be number five. My husband and I have a tradition of giving each other one Christmas gift that cannot be purchased, and I think that good news about my treatment would be one he would like. Much nicer than last year's pre-Christmas craniotomy and cancer diagnosis.

My chemo infusion went well. I brought my laptop and did some work to pass the several hours that I had to spend there. I was able to drive myself home, but I have been enduring a nasty headache (typical side effect of the anti-nausea drip, plus lots of time on the phone and computer, and some minor stress over the eye thing). I forgot to ask about what to take for pain, because:

1) Tylenol is tough on the liver, and so is anti-seizure medication and chemotherapy.
2) Aspirin and ibuprofen can cause bleeding and ulcers, and so can my chemotherapy.
3) I work with a company that has a really great electrostimulation device that works miracles for pain relief (, and I own one of the devices, but electrostimulation is contraindicated for malignant tumor sites.

So for now I think it's down to good nutrition, staying hydrated, practicing stress management, and getting some rest (and probably wrapping up this blog entry to give my eyes some rest).

As I returned home today, I stopped by the mailbox and got another side effect of my chemo treatment, although this time it was financial instead of physical. My insurance won't cover my new chemotherapy, because it is still considered experimental. $8500 every two weeks goes into the "Patient Pays" column. Right now it's just a minor annoyance instead of a major worry, because long ago my doctor's office mentioned that possibility with experimental treatments, and they said they know how to fight with the insurance company to get it covered. Hopefully they will. After all, my tumor has become resistant to the covered chemotherapy, and this new stuff is the best alternative for me. If worst comes to worst and they are unsuccessful getting reimbursed, I guess I just fork over a little money at a time, giving my doctor lots of incentive to keep me alive and capable of working for many years!

A fun day, indeed. At least I can be grateful that:

1. I'm HERE.
2. I could walk my son to school and drive myself downtown for treatment today (and I didn't get lost or mangled in an accident).
3. I had access to gold standard treatments, and since those stopped working I have had access to promising new stuff (and the insurance problems probably won't keep those from me).
4. I had friends who were more than willing to take care of my kids, so that today became a fun playdate for them instead of "Oh, no - Mom has to go to the hospital again".
5. I have a brother who can talk me off the ledge.
6. If worst comes to worst and I do go blind: a) I won't see cellulite, wrinkles, clutter, or "impulse buys" at the store; b) my son is learning to read to me anyway, so we can still have delightful storytimes together; c) my husband loves new techno gadgets, and there are enough voice-activated computer gadgets that would let me keep blogging and working and doing other writing projects; d) I can still hear (and sing) beautiful music; e) I remember most of the book and movie Gone With the Wind, so I can still enjoy it without sight; f) it would take away the temptation to peek at my MRI films before the doctor reads them; g) I always wanted to learn braille; and h) maybe this would make a private limo service a tax-deductible medical expense????
7. I know that this process continues to be watched over, and I continue to be carried through this on the prayers of many (thank you!!!)

Monday, November 13, 2006

Happy Anniversary

Normally, the number thirteen is a lucky one for us. Our son was born in the thirteenth hour of the thirteenth day of March, in the thirteenth year of our marriage.

I'm really not very superstitious, but the number twelve has become less desirable to me. I had brain surgery and learned that the tumor was cancer last December 12 (12/12), and I learned of my tumor recurrence on October 12.

Last year, on November 12 (a happy twelve), our family went to Six Flags. Mary Kay (world's best employer and best-selling cosmetic line - buy their stuff!!!) has an annual company picnic on the second Saturday in November, and they rent the Six Flags amusement park in Arlington. It's always been fun, because despite a lifelong fear of heights, I loved riding rollercoasters and would always head for the big, scary ones. I didn't know that last year would be my last ride on a rollercoaster. (A real one, at least -- I still get to ride the figurative rollercoaster of life.)

It was the next day - Sunday morning, the thirteenth of November - when I had my first known seizure. (Okay, so there was an unlucky thirteen for me.) I was getting my daughter dressed for church, when I suddenly had a deja vu feeling followed by a really sick feeling, like I was going to faint. As I sat down to compose myself, I started smelling a really weird smell. In the past, I would awaken as though I had been having a nightmare -- adrenaline rushing, sick feeling -- except I wouldn't remember a nightmare; only that same strange smell that would waken me. I had no idea what all this was, and yet I remember an ominous feeling haunting me that day. I tried to brush it off as no big deal, but I remember feeling very emotional, especially when singing with the Primary children at church: "Faith is knowing I lived in heaven before my mortal birth/Faith is knowing I can return when my life ends on earth..." But thankfully, as this story unfolded I was flooded with peace and I have been able to lean on the rest of that verse: "...Faith is trust in God above; in Christ who shows the way/Faith is strengthened; I feel it grow, whenever I obey."

It was more than a week after that seizure that I learned it was indeed a seizure caused by a brain tumor, and I started this blog. I knew it was a serious situation, but I had no idea that my life was in such danger. It was a month later before I knew I had a cancer that claims many lives within the first year after diagnosis.

This past weekend was Six Flags Saturday again. We started the day under the Saturday Morning Lights, watching my son's last football game of the season and taking him for his team photo, before heading to the park. My days of riding rollercoasters are over; I have a hole in my brain now, and I am too vulnerable to bleeding, so I'm under doctor's orders to stay off. But I still enjoyed the day, especially now that my son is finally over 42 inches tall and can now go on more rides himself. It was a thrill to watch him having so much fun. We were able to ride the carousel together, and he took me "driving" in an antique car (which appeared safe until we had to stop and the people behind us slammed into our rear at high speed - ow). The rest of the time I got to wave and take pictures and absorb the joy from this five-year-old blur whizzing past me on the exciting kiddie rides.

Even so, I couldn't help but remember that "last day", last year, before my life changed. And as I dressed my daughter for church yesterday morning, I couldn't help being haunted by the real-life deja-vu, and I wondered if I was going to have another seizure. I didn't, but yesterday was the first day I really started feeling like a chemotherapy patient. I fell into bed shortly after getting home. My husband took over choir practice for me that afternoon so I could get more rest. I would try to sleep, only to be awakened with rushes of adrenaline that would make me panic and wonder if a seizure was coming on. I would remind myself that I'm taking a super-high dose of a really effective seizure medication so there was no reason to worry about it.

This morning -- the thirteenth, and the actual anniversary of "seizing the day", I got up out of bed and was rocked with nausea as soon as I stood up. It's a little better now, but I still feel pretty lousy and tired. I am grateful for the words of a cancer survivor who spoke at Relay For Life, who acknowledged that it is hard to feel hope when you don't feel well. It was helpful to remember that and guard against feelings of discouragement. I also remember the words of Lance Armstrong, who said that the better he got, the worse he felt. And finally, I remember my husband giving a talk in church on Sunday, which included reminders to trust in the Lord instead of the arm of flesh. There is great peace in knowing what to believe in.

And after all, here I am: one year after symptoms presented themselves, and less than a month away from the anniversary of my diagnosis. As lousy as I feel today, I still don't feel anything like someone who is fast approaching their expiration date. My lab results were good, so the chemo hasn't destroyed anything good yet (hopefully it's too busy destroying cancer cells). I'm still a brain tumor savant; just a really tired and queasy one.

Thursday, November 09, 2006

My days are numbered...and I'm an owl

Jared and I were always big fans of the comic strip series, Calvin and Hobbes, and one of the many funny moments I remember is when Calvin (age six with a vivid imagination) thinks he has turned himself into an owl. He walks somberly into the kitchen to see his mother, and simply declares, "I'm an owl."

As I lay in bed at 4 am, no longer able to sleep (despite being exhausted all day yesterday), I was tempted to poke Jared and tell him that I, too, am an owl. But I got up and decided to blog instead (my marriage is important to me). Insomnia isn't new to me. I come by it honestly. I could probably call my mom right now, if it didn't mean interrupting her morning walk or her Christmas decorating. When she visits for an overnight stay, I usually awaken early to find my oven cleaned, my kitchen restocked with groceries, and Mom either walking the dog or absorbed in a book, dressed and ready for the day ("What can I do for you, sweetie?").

Being a nocturnal animal has its drawbacks. By day I manage to get things done, but sometimes people have an alarmed look on their face when I look like a zombie. It's not the kind of reaction I try to get when I enter a room. I'm usually too hyper and focused on my "to-do" list to take a nap. My husband offered to get me some ether, but I declined. At bedtime I tend to fall asleep quickly (no surprise there) but after a couple of hours the little hamster wheel in my head starts spinning (let's hope glioblastoma cells can't handle the centrifugal force).

Those first waking moments are always interesting. During the initial shock following cancer diagnosis (and recurrence) I would awaken to a sickening feeling in my gut. However, more often I awaken with a prayer of gratitude for the abundance that I have, starting with the warm and cuddly person next to me. Last week my son (an owlet) wandered into our room and crawled into our bed, so (before transferring him to a beanbag chair at the foot of the bed) I awakened with my two favorite people flanking me on either side, and the nice realization that I was (literally) surrounded by blessings.

My thoughts then turn to all of the things that I need to get done. I have amazing clarity and organizational ability at that point, but as soon as I step out of bed these thoughts disappear and I kick myself for not having written down the fruits of that mental harvest (although I think part of our eighteen years of wedded bliss are attributable to the fact that I don't turn on the light and sit up in bed scribbling notes).

And then sometimes I start dissecting what I know about glioblastoma, as though it is some lame attempt to try and solve the problem myself. But it's a big and complex problem that I can't solve myself, so I struggle to fight off such thoughts. Fortunately, I sometimes hear a voice reminding me that I shouldn't "trust in the arm of flesh..." " thoughts are not your thoughts..." and stuff like that. I also remember what the Lord told the prophet Joseph Smith when he was undergoing intense persecution: "Thy days are known and shall not be numbered any less."

I'm sure that goes for all of us. We know that there is "a time to be born" and "a time to die." Maybe all of our days are numbered and known and appropriate to our purposes here. I've decided that my diagnosis doesn't necessarily change WHEN my life will end here. It's just a creepy, grim insight into HOW my life might end here. Like the Wizard of Oz, it's both "great and terrible" to have some advance notice.

I'm getting sleepy as the dawn rises - it's time for Mama Owl to get the owlet off to school.

Sunday, November 05, 2006

Brain Tumor Savant

I remember waaaaaaaaaaaaay back in the 70's, seeing a television commercial about a fragrance (Enjoli, in fact - which goes to show you the power of music to help you remember a product's name.) In the commercial, a woman struts around, singing:

I can bring home the bacon;
Fry it up in the pan;
And never never never let you forget you're a man!
'Cause I'm a woman...ENJOLI!

The music was effective in helping me remember the commercial and the product three decades later, but it was never effective in persuading me to buy the product. (I guess when I was nine years old I didn't care about bringing home bacon to my man, and after I grew up and did bring home the bacon to my man, I was wearing Chanel No. 5. And now I just don't like the word "bacon" because it reminds me of carcinogenic foods.)

ANYWAY...that little tune went through my head as I started to think about all the cool things I can do, even though I have brain cancer:

I can sing in Messiah;
I can run my own biz;
I can write a book, be a mom, and clog dance like a whiz!
'Cause I'm a brain tu--mor SAVANT!

My husband and I caught part of a documentary a while ago about savants: people with extraordinary mental abilities despite profound disability. I remembered learning about them in college (back then, they were called "idiot savants"). It's kind of funny. I'm not exactly Rain Man, so don't drop matches and expect me to tell you how many are in the pile, and don't ask me what day of the week was July 25, 1967 (...although that's an easy one -- it was a Tuesday). But maybe between the tumor and the treatment, something is tickling what's left of my brain. After all, I can sightread music BETTER than I did before brain surgery. I can even draw better (something I've never done well). There are times when I work better, write better, and think better. And thanks to monthly neuro tests, I can now count backward from 100 by sevens pretty darn fast - a lot faster than my family and friends with brains intact.

I remember going into surgery last December, not knowing what would be left of me afterward. Would I still be me? Would I still be able to do what I need to do and what I like to do? The retention of my capabilities has been astounding, and to find that I can do all that and more is a great blessing.

Granted, I still have my short-term memory flaws ("Dang - I was just carrying my shoes. Where are they?") and I get really tired and sore at times, to slow me down after a day of pushing myself. But as I consider what I have done and what I still can do, I often remark to myself that this is not the face of brain cancer that I had imagined.

When I lectured about dental lab quality system requirements at a college of dentistry a couple of months ago...when I chaired an FDA/medical device industry coalition meeting...when I met with my publisher...when I directed the children's Primary program at church...when I was invited to sing Messiah again at Christmastime...when I sang two concerts in Utah (mostly from memory)...when I did a board meeting presentation the day after my last chemo infusion...when I helped a client get a new product approved by the FDA...when I remembered something from a child psychology class that helped me work with my son...when I picked up the clarinet and played like it had only been a couple of years instead of a couple of decades...and so on...there is always a little voice that says, "This is the real face of brain cancer - it's not so bad, is it?"

Okay, well, maybe it is so bad. It's pretty darn awful to think about. But I don't have to think about it so much when I have been blessed with as normal a life as one can have under these circumstances.

I remember reading that Einstein only used something like ten percent of his brain. At first I thought, hey - if this is true, then what is the big deal about brain cancer? Can I really lose ninety percent of my grey matter and still have genius potential? Who knows? I guess we don't use the full capacity of our minds, and there are a lot of redundant functions in the brain. However, I guess if that critical ten percent is gone, it doesn't matter how much is left. So far it seems like I've got enough of those good cells going strong for now.

Tuesday, October 31, 2006

Wanna See Something Really Scary?

It's Halloween, or as they say at my son's school, it's "Scarecrow Day". We were busily assembling Jacob's scarecrow costume last night, and I couldn't help but think of the scarecrow in the Wizard of Oz ("If I only had a brain!").

When my husband and I first started dating back in high school, we saw the Twilight Zone movie together, and one of the memorable lines from that movie was, "Wanna see something REALLY scary?" Earlier this month, as I was putting up the Halloween decorations, I caught a glimpse of the portfolio case containing all of my MRI films. For a brief moment I thought, "Hey - wanna see something REALLY scary?" And I wondered how creepy it would be to decorate the house with MRI pictures of my brain! I decided it was too creepy, so in the portfolio case they stay...under the couch...but the handle peeks out ever so slightly, so I know they are there...(shudder...)

I also can't help but remember the scene in Steel Magnolias, where (SPOILER ALERT) Julia Roberts goes into renal failure and collapses into a coma on Halloween, with her kid screaming nearby. My new chemotherapy puts me at risk for kidney problems, and a coma isn't a far stretch for a lot of reasons, so it's just an icky, awful association to have sitting there in what's left of my mind. It's sick and twisted and scary, but some people go out of their way for that kind of thing this time of year.

Finally, I can't help but remember my craniotomy every time I see a carved pumpkin!

This afternoon, after school, "Scarecrow Day" becomes "Halloween", and Jacob transforms from his scarecrow persona into a Power Ranger. We're taking on a Disney theme, as a nod to our vacation earlier this year. Our daughter will become Minnie Mouse, and my husband and I will be Donald and Daisy Duck--that is, unless the beanbag chair-sized duck butts on the costumes don't let us fit into our car, and we have to turn to our backup costumes of Mr. and Mrs Incredible (from the movie, The Incredibles). We have a "trunk or treat" activity at our church parking lot (where everyone sets up their cars in the parking lot as trick-or-treat stations and a zillion kids turn out in their costumes - it's super fun), and then we get to come home and play games and greet other trick-or-treaters that come to our door.

It will be fun, although as with any annual event (birthdays, holidays, etc.) there is a wistful thought that maybe this will be our last Halloween together. Maybe, or maybe not. And really, cancer diagnosis aside, this is the way it is for everyone. We never know if it's our last Halloween, or even if it's our last Tuesday. My mom is the picture of health, but I talked to her today as she drove down the street using her cell phone. We both acknowledged that we couldn't predict who was more likely to survive the day. Every day is a gift. And today - like any day on the calendar - is a day for having fun, despite the scary things that might surround us.

Monday, October 30, 2006

Not bad for brain cancer

It's always nice to be missed. I've been so tardy in updating my blog, and as a result there have been many people checking in on me to see if I'm okay.

It's a hard question to answer accurately. I'm not okay in the sense that I have a nasty cancer that is making me (literally) lose my mind, bit by bit. But I am okay in the sense that I'm surviving my new treatment (so far), my spirits are up, and I'm still here. In fact, I'm not bad (for brain cancer, at least)!

I have my next "toxic drip" on Wednesday this week. Toxic Drip # 1 was a lot more tolerable than I thought it would be. I was fine for a few days, crashed for a few days, and went back to being fine. I still have hair, I still have insomnia, and I get an occasional mild headache (the tired kind). I'm back to bouncing between moments of brilliance/accomplishment/great stuff, and moments of "dangit - why did I just walk into this room?"

Last week was kind of fun. For a minute I wondered if I was having a Bruce Willis/Sixth Sense moment (WARNING - SPOILER COMING UP IF YOU HAVEN'T SEEN THE MOVIE) where I died and didn't know it, because a whole bunch of flowers started showing up at our house! It was unexpected...but awfully nice! I loved wafting through my house, enjoying the fragrance and the beautiful sights and pinching myself to make sure I was there in the flesh. (And - HOORAY -- I was! Not bad for brain cancer!) Some of the flowers came with cards that identified the senders, and some were anonymously sent. So for those who sent me flowers but didn't hear back from me, please know that I got them and I love them!

Wednesday, October 18, 2006

Membership Has Its Rewards

This subject came up yesterday as I chatted with a new friend during chemotherapy, but it keeps resonating in my cancer-riddled brain: I feel like I'm in a really lousy club that happens to have really amazing members. Cancer has touched family members who are dear to me. Cancer has touched good friends of mine. Cancer has introduced me to new friends who are also brave in their battles. Cancer has touched the president of our church. Even my radiation oncologist is a cancer survivor. It goes on.

I recently learned that one of my favorite high school teachers has cancer. He was our choir director and our Cloggers West director. The one who introduced me to my two favorite talents, who gave me my favorite high school memories, and who put me in touch with my gaggle of girlfriends and the boy that I would marry. I had the pleasure of visiting with him on the phone before we left for Utah, and then again in person when he came to our concert in Salt Lake City. He has been a beloved teacher and mentor to many, and his influence has had ripple effects more than two decades after graduation. I always think of him gratefully every time I put on my clogging shoes, when I direct my church choir, and when I glance at a picture of my high school buddies; and I'm so glad I was able to express my appreciation to him during our visit.

As I survey the amazing people who have been in this battle -- from those just joining the ranks to those in the crossfire and those whose battle is long over -- I can't help but wonder if I should just consider myself lucky to be among such a group.

For a while I wondered if it were a chicken-and-egg question: Do only great people get cancer? Or does cancer just make people great? I think cancer is allowed to touch great people, because they are strong enough to handle such a trial. And I think cancer is allowed to touch anyone and make them great, because of its refining capabilities. So as much as I cringe saying this, it almost becomes an honor to be one of the crowd.

Someday -- hopefully a LONG time from now -- when we're all sitting in the great beyond, reflecting back on our lives and deaths, I look forward to the association with others who endured this experience called cancer. We'll have a little club: the SUCUWED's (SUrvived Cancer Until WE Died). No initiation process, since the shock and awe and all the other stuff that comes with diagnosis and treatment is worse than any hazing incident on the news. But membership has its rewards. We get experiences that come from no other source. We get miracles (regardless of whether we are cured or killed). We get cancer glasses that let us see everything as more precious than ever. We take nothing for granted. We have the ultimate appreciation for our Savior, Jesus Christ. We get astounded by outpourings of love from those around us.

I pray for Terry, my teacher, and his family. I think I know what to pray for, since I'm in the same club. I hope others who read this will pray for them, too.

Tuesday, October 17, 2006

Toxic Drip # 1

Today was my first infusion experience with the new chemotherapy combination of Avastin and Carboplatin. It was definitely different from the Temodar experience.
  • It is delivered intravenously, so I didn't have to take it on an empty stomach or sit upright for 30 minutes afterward (this is both a pro and a con)
  • It was a four hour drip (con), but it seemed to go by quickly (pro)
  • It is delivered with a dose of anti-nausea and steroids (also, both a pro and con)
  • The nurses who work with me are very comfort-oriented. I was set up in a nice recliner with pillows and a little desk for my laptop so that I could do some work. (pro, even though I could only work offline). They had a TV, DVD player, blankets, snacks, and drinks, if we wanted them (we didn't, but it was nice to know that they were there, so definitely a pro)
  • My husband was able to come with me and stay with me the whole time (PRO)
  • I got to meet other patients and their spouses, and I think I made a friend (pro)
  • I got a flu shot and pneumonia shot (pro) because I will be more vulnerable to both (con)
  • It was easy to tolerate - so far (pro). I hope the tumor disagrees (which would be a super PRO).

Another new experience, and another new adventure. I joked with the nurse about having omitted "traffic" from the informed consent list of adverse events relating to the treatment. Overall, it wasn't as scary/gross/awful as I thought it could have been. I hope and pray that it stays tolerable for every part of me except the tumor.

Monday, October 16, 2006

Like Baby Teeth

It's Chemo Eve. Not as festive as Christmas Eve or New Year's Eve, but it's in the forefront of my mind. And unlike other festive occasions, where I turn down offers of the traditional cocktail (good thing, since I need all the good brain cells that I can keep), this time I will be having a cocktail - a mixture of special chemotherapy drugs that sound like a stark contrast to the "easy" Temodar that I was taking before. So... tomorrow I'll raise my IV bag and make a toast to the new chapter in this scary story.

We continued my husband's birthday celebration over the weekend. Part of it included some shopping, where I found a cute little "tooth fairy" box for my son. He'll be six in March, and he is excited about the possibility that he might soon start to get wiggly teeth that fall out.

And of course, since everything is a life analogy when I have my cancer glasses on, it occurred to me that our earthly existence is like having baby teeth.

I received a body when I was born, and I leave it behind when I die. This whole cancer thing is just about my body. It's not about ME. And besides, I already knew that this isn't even supposed to be my permanent body. It's like the baby teeth that we knew would eventually fall out. My body is the temporary, trial model that I get to use for a little while here until it wears out/gets flattened by a truck/chokes on something/whatever. I may get a little wiggly at first, and then -- out. Jared won't have to put me under his pillow, but he will get a settlement from the life insurance fairy.

And when all that happens, I'll still be ME - just waiting for my permanent body and hanging out in a different place and looking forward to being reunited with my family someday. My permanent, resurrected body will never get cancer, it will never die, and we'll just hope that it will also be cellulite-free. As Job said, "though worms destroy this body, yet in my flesh shall I see God."

Even so, I don't exactly view my demise with the same enthusiasm that my son gives to his "tooth fairy" box. As much as we recognize the necessarily temporary nature of life, and how it fits into the permanent plan, we still reverence and respect and try to protect life. We don't try to wiggle out of it early, like a kid will do with a loose tooth. I have a good life, and I want it to last as long as possible. But since we all must face our mortality at some point, it is comforting to realize how it fits into the grand scheme of things. It's just temporary, like baby teeth. It's just a body that is programmed to wear out, break, and die. It's just my body that is in danger. It's not ME.

Friday, October 13, 2006

Mourning Morning

Ugh. It had long faded into mere memory, but this morning it was back: that awful feeling in my stomach, and the grief and worry as I awaken to the realization of what is going on. It's just part of the mourning process. It's natural to feel a sense of grief when something meaningful is threatened or lost. My life is meaningful. It is wonderful. I have marveled at the abundance within my life. So, of course the possibility of leaving it behind sooner than hoped is something worthy of grief (even though I know it is a temporary loss). And because things were going so well for so long, there was the hope that things would continue in a miraculous way. And maybe they still will, somehow. But adjusting one's view when things change can trigger grief for the "old" picture. So I awaken to that awful sick feeling again, and I guess I will at least for a season.

Luckily I still awaken to the realization of great blessings (including the one slumbering next to me), and it helps. It reminds me of a poem my mom wrote a long time ago, called, "Morning":

Still half asleep, I hear the rain -
Sad little drops from murky skies.
Another soggy, muddy boot day
Settles sadly in my foggy mind
Sighing, waking, I turn toward you
And find your sweet smile and bear hug.
Slow, sunshiny gladness stirs my heart
As my happy world turns warm and dry.

And after arising this morning I remembered the words of Ecclesiastes:

To every thing there is a season, and a time to every purpose under the heaven...
...a time to weep, and a time to laugh; a time to mourn, and a time to dance...

Maybe morning time is my "mourning" time (which is thankfully supported by a bear hug), and maybe (hopefully) there will also be time each day to laugh and dance.

Thursday, October 12, 2006

In My Distress

Even though I know that "ultimately" all will be well, there is still the initial sting and injury surrounding this latest news. Fortunately, the words to one of the songs we sang on our recent choir trip really rang true, because there is an underlying peace and calm that attends my trust and confidence in the Lord, who pours out his abundance upon me:

In my distress I cried unto the Lord
Oh, Lord in Heaven, help me overcome
that which is hindering me from eternal bliss.
Oh, my Father, bless me daily
With thy Spirit I pray.
I pray that Thou might hear my humble prayer
Like men of old.
Stand still -
Stand still, oh my soul and consider this wonderful work of God
Stand still, oh my soul and consider,
His power, eternal power, shines forth,
Forming so vast a universe as we see.
In my distress I cried unto the Lord
And peace came to my soul.

This was written by David Featherstone, our choir director. He also wrote another song that has been a source of inspiration throughout many different trials in my life:

O daughter of the living God
Who dares become a Child of Light.
Woudst thou embark where few have trod,
With faith to bring thee through the night,
O daughter of the living God, our God?
Tenets gathered in thy youth
Compressed by hard experience
And kiln'd in fires of constant truth
Now clear, bright gems of permanence
What gentle strength! What dignity!
Thy countenance doth stir my heart
To seek my own serenity
And keep the world and me apart
While they adorn her crown above
With virtue, purity, and love

Progress Report

Yeah, darn it - there is progress to report. Progress is not good in the world of cancer.

Today's MRI revealed tumor progression. I was always told that it was a matter of "when", not "if", but there has always been hope that I would somehow become a medical oddity (in a good way).

So far it's rather small and in the same general area. Just a blob extending out of the tumor bed area. I'm glad it's not a bunch of grapes sitting on my brain stem or anything like that. But it's the signal that Temodar (the wonder drug) is no longer effective for me.

My options are:

1. Surgery, which is something I'd prefer to avoid as the holiday season approaches (already did that to my family last year). It's also not recommended, given the small size and lack of symptoms.
2. Focused radiation, which is not recommended, because the tumor is larger and has more infiltrating characteristics than what would be ideal for this treatment.
3. Chemotherapy using an experimental combination of Avastin and Carboplatin. This is something my doctor has been using with good results. It's not a cure, and it has its own down-side, but it's something. This is what we are going with.

I start on Tuesday. I travel downtown and hook up to an IV for four hours. Luckily I have a laptop and can maybe get some work done while I sit there. I go back two weeks later for a different infusion (a little shorter) and then repeat every two weeks. I undergo a LOT of monitoring for all of the nasty side effects on my kidneys, liver, stomach, and immune system. I have MRI's every other month, as usual. If this works - great - we keep going. If not, the list of options narrows a little more.

I have been amazed at the calm and peace I have felt as I digest this news. It's not a happy thing. It's disappointing, and it hurts to know that this causes pain for my husband, my parents, and others who just think I'm so darn cute and lovable. I know that this is a big change that will require more adjustment, more logistics to work out, etc. It may affect the things that consume most of my time and energy right now. It puts urgency into the "tie up loose ends" in my life. It causes me to worry about a potential financial impact. It causes me to wonder if (or when) I will start to lose some of my talents and abilities. (Got another Messiah performance on December 17 - gotta keep enough right brain intact!!!) It especially gives me concern about my son, because I want to shield him from this crisis.

And yet - despite all of this - there is calm and peace. There is stuff to think about and work through in my mind, but I feel no despair. I feel sad, but I feel that I am watched over and cared for. My trust in the Lord has not wavered at all. I know that all will be well, whatever is happening now. The prayers of many have given me what I need to endure this. I'm sure that many more prayers will continue on my behalf, and they will continue to help me. Just please pray for my family, too.

Be still, my soul,
thy best, thy Heavenly Friend
through thorny ways leads to a joyful end.

Wednesday, October 11, 2006


Today my husband turned forty. Lucky him - I hope I get to do that someday!

I think in our B.C. life, milestone birthdays were more sobering. Today I just think it's cool that he can be forty and well. It's a goal I hope to achieve.

Tomorrow is a different kind of milestone for me. I will be exactly 10 months post-diagnosis. I still hear whisperings from the old newspaper article that marveled about a man going nine months without tumor recurrence, because "most" glioblastoma patients have their fatal recurrence show up within the first nine months. It gives me the creeps to think that the odds are favorable for an "interesting" result in tomorrow's MRI. I just try to tell myself that REALLY what this means is more good news if things go well tomorrow. And if things don't...well, then - it's not unusual.

To make things extra scary (after all, it is October, and some folks will pay good money to get the willies), I was confirming my appointment time for tomorrow's MRI, and I learned that I have to come in earlier than planned, because this will be a special MRI with spectroscopy and perfusion. After pressing for more information, I learned that this is a way of enhancing my surveillance, and it was ordered by my doctor as a result of what she saw on my August scan. Now that threw me for a loop, because I remembered the August results being very good. However, because the doctor did note shrinkage of the cavity in my head, and some very small enhancement, she ordered the next scan to include these special techniques for distinguishing tumor recurrence from peri-tumoral edema (aka radiation effects that can occur even months or years after radiation treatment) or other weird things. This was described to me in a reassuring way - there was not a concern; this is often done about every six months or so with patients; and even if it were tumor, it was so small; etc. After all, if it were something urgent, they wouldn't have waited two months to do this test. But it's still bad timing, considering those whisperings in my head about that magic nine-month window.

Still - it already is what it is, and tomorrow will just be a matter of finding out and dealing with whatever it is (good or bad). I did learn that such techniques are very accurate in determining the level of tumor infiltration, even more so than the histological grade of the tumor. The little denial bunny inside me (who loved my sister-in-law's dream, in which my diagnosis was found to be wrong) likes to think of this as a way to start raising suspicions about my diagnosis. Of course, I don't want the little denial bunny to jinx things such that tomorrow's result will mean this weekend's emergency craniotomy.

This is part of the rollercoaster ride of life (especially life with cancer). It's the part that makes the stomach sick. It's the part that makes my eyes hurt and my head feel heavy. It's the part that forces me to remember what has carried me through the past ten months.

Hopefully it's also the part that generates a lot of prayer, and hopefully (like many other times) it will be the part where we get to marvel at the amazing power of prayer.

Today we mark a birthday, and we will continue with family celebrations of my husband's milestone throughout the weekend. I told him that I hope I don't ruin his birthday this time, like I ruined the holidays last year. His reply was that I didn't ruin anything last year -- the cancer did. My mom's reply: every day we are breathing is a day to celebrate, no matter what else is going on.

I'm just hoping that with enough faith and prayer, we just might be able to celebrate both my husband's milestone and my own milestone: a remarkable ten months without tumor recurrence.