Monday, March 31, 2008

! EMIT NI SDRAWKCAB GNIGGOLB M'I

(Only a brain-tumor savant can come up with a title like that, right?)

To quote Ferris Bueller, "Life moves pretty fast. If you don't stop and look around once in a while you could miss it."

I have so much to catch up on, so here's a pretty fast rundown of my recent life...in reverse:


1. Karate belt test and 2. Beowulf:

I already posted about these before I decided to catch up in reverse order. So keep on scrolling past this post and you'll find them.

3. Spring break in Nauvoo:


We drove the kiddos to Nauvoo, Illinois, for a tour of that historic place. We had twelve hours (each way) of bonding in the car. (When I say bonding, of course, I actually mean hearing "are we in Nauvoo yet?" for twelve hours, interspersed with occasional songs.)


We stayed with friends who were very gracious and generous hosts. They even watched the kids so my husband and I could attend the Nauvoo temple. The rest of our activities were very kid-friendly: we went on a wagon ride through the city and saw fun demonstrations of frontier life in the mid-1800's. We also gained an appreciation for the early pioneers who fled religious persecution in Missouri and took refuge in this swampy land by the Mississippi River and made it a beautiful, prosperous city before being forced to migrate westward.


I remember hearing many times that these people endured hardships because of their faith, and that if we have faith we will also be able to endure all that we must face in our lifetimes. That is absolutely true.

As a -- pardon the pun -- side trip, I should mention that during the ride home we decided to read a novel together. I chose Tuck Everlasting, which is on Laura Bush's list of favorite children's literature. (I own all the books on her list.) Tuck Everlasting is a wonderful story that makes you think about whether you would choose to live forever at the same age. It was obviously relevant and very blog-worthy. We had some thoughtful discussions as a family (in-between songs and "Are we home yet?" questions).

4. Homecoming Day:

We traditionally celebrate our son's "homecoming day" with a family picture. You'll see it in my earlier post (below) -- we're in our karate uniforms.

5. Lego my Party:


I mentioned our son's birthday a while ago. He turned the big seven. I remember telling my mom how amazing it was that the little baby boy we brought home is now seven years old. She responded by telling me how amazing it was that the little baby girl she brought home is now that little boy's mom.

We celebrated with a Lego-themed party. In my completely unbiased opinion as the half-brains behind the event, I thought it was fabulous. The cake was easier this year (compared to last year's Star Wars/R2D2 cake). I made the number seven out of Lego-brick shapes constructed of cake rectangles topped with Oreo cookies to make the "bumps". We had freestyle building contests where everyone got an award for something like "Most Creative Use of Green Blocks", etc. We had them team up and race to build something from a pattern. We did the pinata. My husband made a 2-D donkey out of Legos, and they had to pin a Lego "tail" on the donkey. They had to guess how many Legos were in a jar. And so on. We had a fun time, and it was a joy once again to celebrate another birthday with my boy.

6. By this shall men know...

My Relief Society president was eager to know the outcome of my last MRI, so as soon as I left the doctor's office I gave her a call with the good news. She was elated, and asked if she could come by for a visit. We arranged a time early in the following afternoon.

I expected her to come either alone or with her counselors and secretary. However, when I opened the door to greet her I was surprised to find that there were many cars pulling up and parking in front of my house. Women from church were coming by the droves, wearing yellow shirts and carrying yellow helium balloons, and rushing in with hugs and congratulations. One brought a bouquet of yellow flowers. Another brought a platter of cupcakes with homemade yellow icing. Another brought Krispy Kreme donuts with lemon filling. (Someone pointed out to me that the yellow theme was symbolic of the yellow Livestrong bracelet that I always wear.) It was a surprise party -- FOR ME!!

It was so wonderful to share this happy moment with my "sisters." As I absorbed this parade of kind friends, eager to celebrate with me, I remembered an earlier parade. Two years ago, when I couldn't drive and I couldn't even lift my own daughter, these same women were at my doorstep with a continuous stream of service to meet my every need. They were there for me when things were really bad, and now they are here for me while I enjoy a season of good news. Some women could not come to the celebration, but they sent cards and emails, they phoned me and they hugged me the next Sunday in church.

Many thanked ME for inspiring them. I thought it was funny. All I did was keep breathing for the past 27 months. They were the ones who took care of me and my family. They prayed and fasted and exercised great faith on my behalf. They are the ones who have inspired me and kept me going.

Every time I consider all that has been done for me I kept remembering John 13:35: "By this shall all men know that ye are my disciples, if ye have love one to another."

I have been in the midst of many disciples.

Earned My Stripe



"1st Rokkyu"

That's short for "blue with green stripe." I think of it as "blue-and-a-half." It's my latest rank achievement in karate following a grueling two-hour test on Saturday.

It was awesome, though. Sensei joked about it being like childbirth, where the exhiliration of the outcome makes you forget the pain. (We discussed it theoretically, of course, as neither he nor I have given birth.) It was a painful test at times, especially when I got a couple of accidental palm heel strikes to my head by a fellow student (who had to pay with 25 pushups and a stern warning from the instructor that "sorry" doesn't take the hurt away). But I continued to marvel that -- wow -- I am doing this cool stuff! I am doing pushups with a group of people on a cement parking lot behind the studio (and thank goodness it's not raining)! Wow -- now I am standing tall in a sweaty dojo in front position with hands clasped and elbows up and arms shaking, trying not to pass out because I forgot to eat breakfast--and lunch--before coming! Wow -- now I am doing Kata #2 forms over and over again for different instructors! Wow -- I am remembering kenpos and defensive maneuvers and keeping my balance! Wow -- I wonder if that palm heel strike is going to show up on my next MRI! Wow -- I am sweating like a pig...and only people who are ALIVE can do that!!!

Besides -- and I've said it before -- karate is like the ultimate neuro test. I needed to demonstrate memory, reflexes, neuromuscular strength, and balance. I've been off chemotherapy for almost a month now. I'm still riding on some prayers, although many people think I'm cured which makes me worry about "prayer tapering". So it's nice to have this test to reassure me that-- so far at least (knock wood)-- things must still be going okay!

I celebrated with a badly needed session with Carlos the Magnificent, for a new cut and highlights.

During the test my husband earned his orange belt, having just started a couple of months ago. (His test only took one hour.) He shed his yellow belt, so I don't get to tease him about being a yellow-belly anymore. My son had his own test a little while ago -- he's my Little Boy Blue -- just barely in my wake. My daughter has her own gi and took a few lessons herself. We decided that the family that kicks together...sticks together!

By the way, the picture posted here is misleading -- it was taken a couple of weeks before the test, so we're wearing outdated belts (and I'm sporting roots). But this is our annual "homecoming day" family picture and it was worth sharing here since it's karate-themed.

It's on to green for me now. As Kermit said, "it's not easy..." but as with life, the joy is in the journey!

WHITE*
YELLOW
ORANGE**
PURPLE
BLUE***
BLUE/GREEN****
GREEN
GREEN/BROWN
BROWN (3 LEVELS)
BLACK
*Em's rank
**Prince Jared's rank
***Jake's rank
****Half-brain's rank

Thursday, March 27, 2008

No, she didn't get cocky and quit blogging!

What, do I think I have all the time in the world to catch up on my blog? Do I need bad news to kick me into high gear? (I hope not!)

I have tons of updates and travelogs and pictures to put in here in order to catch up. Meanwhile, I have to at least share a quick thought from my latest read.

I recently sponsored the book Beowulf for our book group. It was one that I was supposed to read in high school, but didn't. But I finally had half a mind (ha ha) to read it recently, and I love it, because:

1. The hero, Beowulf, is Scandanavian (part of my ancestry is Swedish and Danish).
2. Beowulf comes to save a village that is being brutally attacked by the evil monster Grendel (my monster is a very deadly brain cancer, but we could relate this to any trial that seems to overwhelm us).
3. He fights this monster without any armor or weapons and survives against all odds, and he does it by (literally) hanging in there. He jumps on the monster and rides out the attack by holding fast to Grendel's arm, and ends up ripping Grendel's arm off at the shoulder, forcing Grendel to retreat and die.

I watched the movie (it's gross) and the fight with Grendel is portrayed as a pretty rough ride. We go through some pretty wild rides ourselves, and if we can just hang on when it gets really bad, we'll emerge victorious.

Thursday, March 13, 2008

...and TWENTY - SEVEN!

Actually, my 27-month "birthday" was yesterday. Or maybe if we factor in leap year it was two days ago. Good thing I have clinical evidence of a brain!

I'm not a numerologist, but it's kind of fun to realize that I am now thirteen months beyond the best-case median survival point, and I am finally remembering and writing about it on the thirteenth of the month...which also happens to be my son's birthday. He celebrates birthday #7, which many consider to be a lucky number.

We are lucky. We are blessed.

We'll definitely eat cake!

Saturday, March 08, 2008

Some dreams fall through

In the wake of my celebration (which I will write more about later) I received some sobering news. Dr. Samuel Hassenbusch, the neurosurgeon who came up with his own treatment for his glioblastoma, died at the end of February. He almost made it to "long term" status (3 years is considered "long-term survival"), and had actually gone for two years without a recurrence. But nine months before he died it came back with a vengeance.

Dr. Hassenbusch has been a role model for others facing this illness, and he had been very kind to me as I am sure he has been to many. It is very disheartening news.

I'm around the same point in the post-diagnosis timeline where he was when his cancer returned. I have the benefit of good clinical results right now, and I am very grateful. But this was a reminder that I have to keep looking over my shoulder.

Stuff I have to remember as I digest this news:

1. Hearing good stories is encouraging and hearing sad stories is discouraging. But my reality is not determined by someone else's outcome. (My reality, however, can be influenced by my attitude.)

2. Some people succomb to this disease very quickly, and some drag it out much longer than expected. Everyone's biology is different. Everyone's life is different. We each have a unique purpose and plan.

3. Everyone eventually dies from something. Meanwhile, life is worth living and savoring while we have it.

4. I don't get to choose whether I follow a similar outcome pattern. But I can choose to follow his positive example of managing life with this disease, and try to give encouragement to others to do the same.

There was a brief line from a sad little song from -- of all things -- the Muppet Christmas Carol movie that popped into (what's left of) my mind as I thought of this very kind and influential person who fought the good fight:

Yes, some dreams come true
And yes, some dreams fall through
And yes, the time has come for us to say good-bye

(and "thank you")

http://www.chron.com/disp/story.mpl/metropolitan/5569831.html

Thursday, March 06, 2008

Good to the last drop

"Graduation" photo (from left): Nurse Elizabeth, ME with my hands on Nurse Charlie's shoulders and Prince Jared behind me, Dr. Karen Fink, and Nurse Practitioner Vanessa

My last drop of chemotherapy was delivered two weeks ago. This week's MRI looked great.

After two years of chemotherapy I have officially graduated from treatment and will now just be monitored. My veins get a break for a while. I don't have to worry about the chemotherapy causing stroke. I get to pull my daughter out of preschool and spend more time with her instead of constantly shuttling to office visits and labs. It's a great milestone.

I didn't bring a mortarboard cap (didn't want to presume before I heard the news) but we did take a group "graduation" photo at Dr. Fink's office. They congratulated me and very kindly DID NOT sing the "na na na na -- hey hey hey -- GOOD BYE" song. (I do get to come back -- just for monitoring.)

Today give a prayer of thanks. I called my neurologist, who prayed over the phone with me as we gave thanks to the One who has heard and answered many prayers on my behalf. I also have to thank all of you who have offered those prayers time and time again. And thanks to Dr. Fink, Vanessa, Charlie, Stephanie, Elizabeth, Ellen, Pam-the-MRI-Technician, all the people I'm forgetting to name, and the makers of Avastin and Carboplatin. And I'd go on, but the Oscar theme music would start playing and someone in a cocktail dress would take me by the arm and lead me away.

I STILL NEED PRAYERS!!! I'm sure the next MRI will be another nervous one, because it will be after my first "solo" flight. I'll probably be extra worried any time I forget where I put my keys, so it helps to feel that "floating on prayer" feeling.

As my doctor said when I began maintenance treatment six months ago, this tumor is "nicely put to sleep". Earlier today my kids were listening to Laurie Berkner sing "The Lion Sleeps Tonight," so in the back of (what's left of) my mind I keep hearing music:


In the jungle

My mind's own jungle

The tumor sleeps tonight

In the jungle

My mind's own jungle

The tumor sleeps tonight

(A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh...)


Near the good cells

The good gli-al cells

The tumor sleeps tonight

Near the good cells

The good gli-al cells

The tumor sleeps tonight

(A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh...)


Hush, my darling

Don't fear my darling

The tumor sleeps tonight

Hush, my darling

Don't fear my darling

The tumor sleeps tonight

(A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh...)

(ChEEE-ee-ee-ee-ee-MO-um-A-WAY!)

Sunday, March 02, 2008

The Straight and Narrow

I am fortunate to have wonderful teachers in our ward at church. Our Sunday School teacher gave a great lesson today on the atonement of Jesus Christ, and how it overcomes both physical death and spiritual death (or sin).

I could not do the lesson justice by trying to recap it here, and there were too many good things to talk about in one blog post anyway (even with my ability to be long-winded). But a couple of minor things in the lesson were particularly timely for me, considering that I am only days away from a potential milestone that has been on (what's left of) my mind. My MRI is this week, and if it looks good I may graduate from treatment and just undergo monitoring.

One comment was made in the lesson about how we need not fear death, because it is part of the plan for returning from whence we came. I believe that to be true -- we all hope to go to heaven someday. We just don't want to be pulled away from our toys and our friends like the screaming toddler leaving his playgroup to go back home. But once we're safely home we realize that it's where we belong, so there is no need to fear.

Another comment was made about the straight and narrow path, which is a familiar term to many. Straight and narrow can appear on the surface to be restrictive and potentially difficult. But our teacher commented on the following passage in 2 Nephi 9:41: "O then, my beloved brethren, come unto the Lord, the Holy One. Remember that his paths are righteous. Behold, the way for man is NARROW, BUT IT LIETH IN A STRAIGHT COURSE before him, and the keeper of the gate is the Holy One of Israel; and he employeth no servant there; and there is none other way save it be by the gate; for he cannot be deceived, for the Lord God is his name." The teacher highlighted the point that the way is narrow -- but it lies in a straight course -- making it clear and possible to travel. Having driven the Alpine Loop in the mountains of Utah, I can appreciate the difference between something that is narrow and full of hairpin turns, and something that is narrow but straightly pointed in the direction we want to go. It's the safest and surest way to reach our destination.

And of course, the remaining portion of my mind wandered to the other straight and narrow path coming up this week for me: the MRI tube. It's definitely narrow (it would seem less narrow if I weren't such a cookie monster), and thank goodness it is straight. In fact, when I go in the tube they stick a little mirror in front of my face that is angled to show me the straight path out towards my feet (which is nicer to look at than the wall only an inch or so from my nose). I'm glad they don't have to snake me through a big tortuous pipe!

Life -- especially the right kind of life that takes us where we really want to go -- is possible for us. The way is narrow but straight, so we can make it. And my upcoming trip through the narrow MRI tube is also doable. I go straight in, pretend I'm having an elaborate spa treatment for about an hour, and come straight out. Then I have a suspensful moment (using the term "moment" very loosely, since my doctor's appointment isn't until the following day) while I wait to hear the results of the scan. That part seems less straight and narrow and more "long and winding road" (in pops Paul McCartney singing, "don't leave me waiting here"...). But it's still doable because of the straight and narrow way of life which is the plan laid out for me by a loving God. And it's also doable because my straight and narrow path of life is lined with many good people who keep me pointed forward and staying upright with their love, friendship, and many prayers.