ch-ch-ch-ch-changes...

Today I was called, sustained, and set apart to be a teacher in our Relief Society organization (the women's organization in our church). I teach a thirty-minute lesson every third Sunday, starting this month.

I was thrilled to get this calling for many reasons, but especially because it requires me to be alive and functioning! They don't need me to be the choir director for the Second Coming -- at least not yet! (Those who have read my earliest posts know that my niece's theory was that if I died, maybe it was so I could be the choir director for the Second Coming!) I'm glad that my last calling wasn't my LAST calling, and that I can still serve a useful purpose here upon the earth.

I am looking forward to teaching the sisters in my ward. For one thing, I already know firsthand that they are a very charitable group of women, so it makes me feel less nervous as I prepare my first lesson. Also, it will be nice to spend more time giving back something to these women, who rendered so much service to me when I needed it.

This new opportunity is great but also somewhat bittersweet, as the plan is to eventually release me from my calling as the Primary music director after the children do their fall program. Singing with the Primary children is part of my music therapy. I have had many Maria Von Trapp moments working with them, and will miss them dearly. ("So long, farewell, auf wiedersehen, good-bye...")

Change can be hard to adjust to, especially when basking in a comfort zone. It's hard to end a good chapter. The good news is that when we end a chapter, we start a new one, and it can be full of wonderful things. And even when we have to put our pencils down and end the whole story of our lives there is the post-life epilogue.

I'm glad that I will still get to see the Primary children sing, and maybe I'll get a chance to substitute on occasion for the new director. I still have my callings as the ward choir director and music chair, so I still get some good music therapy. (And we're starting to work on Christmas music already!) And I am really looking forward to this new teaching opportunity, because I came to appreciate long ago that the teacher is the one who learns the most.

Cleared for landing?

Lab results this week = good! ANC (absolute neutrophyl count) is on the low end of good, so I still need to be careful around germs, but everything was good enough to proceed with next week's chemotherapy infusion.

It might be my last one. At least I know it's the last one for this treatment protocol. I feel very fortunate to have gone twelve cycles - as planned - without having any problems that would delay or change treatment.

The end of this cycle will be pivotal, as we see how the MRI looks on September 18, and decide where to go from there.

Starting Cycle 12

Labwork this week = excellent! I remain the walking miracle. I aced the neuro test, too. (Memory words today were butterfly, apple, and baseball.)

I was cleared for my long chemo infusion today. This is the start of cycle 12, the last four weeks of the treatment protocol that I began last October, when tumor progression was noted. The treatment has been very successful (miracles all around). In two weeks I have a short chemo infusion, and at the end of this four week cycle I will have another MRI, which will be a turning point. It will either have bad news, which will cause us to re-evaluate our approach, or it will have good news (like it has each time since I started this new treatment). If the latter is the result, my oncologist and I will be discussing whether to go on a maintenance treatment regimen (involving less chemotherapy), or whether I can take a break altogether from treatments and just undergo monitoring. It would be the closest thing to the "r" word (remission) that is possible in this kind of cancer. It would be an awesome thing. There will be a huge call for prayers as we lead up to that pivotal moment!

...and Nineteen!

No, I haven't had a setback! I'm still celebrating 20 months of A.D. life and doing well (scored over 400 points in Scrabble against a whole-brained person). This "nineteen" refers to nineteen years of wedded bliss! It was an anniversary that I didn't think I'd be able to see when I was initially diagnosed, but people told me to ignore the statistics, and they were right. My mom said that if I hang in there for our twentieth wedding anniversary she wants to send us to Hawaii.

Our nineteenth wedding anniversary was on Monday, but in typical fashion we made it a long celebration. On Saturday Prince Jared spent the entire day cleaning our bedroom, which was really nice! I walked in and wondered if he had built a bigger room!

On Sunday we had an anniversary-themed dinner with my dad and stepmom. I decorated the dining room with my wedding gown and temple dress and pictures and flowers and stuff. We put a small television in the room and played our wedding video during the dinner. It's always so fun to see that happy young couple at a time when we figured we had just made it to Happily-Ever-After, and we had no idea what challenges we would face together. Luckily we've weathered all the storms of our life so far by clinging together. It's always nice to be married to your best friend.

We had a family night/double-date night with the kids Monday evening, and saw Hairspray at a dinner theater place. I thought one of the songs was especially appropriate for our anniversary state of mind:

You're Timeless To Me
(just some snippets of it, at least!)

You're like a stinky old cheese, babe
Just gettin' riper with age
You're like a fatal disease, babe
But there's no cure
So let this fever rage

Some folks can't stand it
Say time is a bandit
But i take the opposite view
Cause when i need a lift
Time brings a gift
Another day with you

A twist or a waltz
It's all the same schmaltz
With just a change in the scenery
You'll never be old hat
That's that!
You're timeless to me

You're like a rare vintage ripple
A vintage they'll never forget
So pour me a teeny virgin triple
And we can toast the fact we ain't dead yet!

I can't stop eating
Your hairline's receding
Soon there'll be nothing at all
So, you'll wear a wig
While i roast a pig
Hey! Pass that Geritol

You're like a broken down Chevy
All you need is a fresh coat of paint

And you got me goin' hot and heavy
You're fat and old, but baby, boring you ain't!

Some folks don't get it
But we never fret it
'Cause we know that time is our friend
It's plain to see
That you're stuck with me
Until the bitter end...

You'll always hit the spot
Big shot!
You're timeless to me

You'll always be du jour
Mon amour
You're timeless to me

You'll always be first string
Ring-a-ding-ding!
You're timeless to me

It's been a while since I added a song to my blog soundtrack, and I thought this one was pretty cute!

On Tuesday my dad and stepmom watched the kids, so we could go to the temple and out to dinner. At the temple we did proxy sealings, which is a nice way to relive our own marriage sealing in the Salt Lake Temple. The ceremony is almost similar, so we make it a tradition to go and do that every year. It's kind of like our own way of renewing our vows and being reminded of the blessings that are pronounced upon a couple who is sealed for time and all eternity. It's nice to really be "timeless" to each other.

After the temple we headed off to our anniversary dinner spot, which is Randy's Steakhouse in Frisco. We discovered this place ten years ago, and have gone there for our anniversary every year since. It is a very romantic setting in a restored historical home, with a piano bar and more dining rooms added on throughout the years. Randy himself cuts each steak before it is cooked, and then he strolls through the restaurant, making friends with the customers as they dine. He congratulated us heartily and treated us to lemon chiffon cake. We had our typical fabulous super-tender 8 oz filet, and we reminisced about the many changes that have taken place over the past ten years since we had our first dinner there.

Back then we had two beagles and no kids, we lived in the third of five homes we have had since moving to our town nearly twelve years ago, and we worked for different companies than we do now. My parents had just divorced, and we thought that was the worst thing that would ever happen to us. The extent of our infertility, miscarriage, and adoption adventures were yet unknown at that time. Cancer was something that only happened to other, older people, as far as we were concerned.

Life has turned out very differently than it looked back then. In some ways it was bad, in other ways it was good, but through both good and bad we have been blessed. John Lennon was right: "Life is what happens to you while you're busy making other plans."

As it turned out, my parents' divorce caused us to reinforce and fortify our still-happy marriage. This prepared us for the onslaught of infertility, which usually attacks all the vital parts of a marriage. We emerged from heartbreaking experiences stronger instead of broken. We learned that our greatest blessings came in unexpected packages, and that thorny ways did lead to joyful ends.

That experience taught us to trust completely in the Lord, because his thoughts and ways are higher than our ways, and if we let him be in charge of the blessings and how they come about, they end up being a lot better than what we could come up with on our own. From a practical standpoint, it also taught us important medical information, so we were being prepared both spiritually and physically for our next adventure: cancer. Who knows what is next, but we know that whatever it is, we will be prepared.

Luckily many more surprises were fun. Stuff we never expected, but love, include:

- the house we live in today

- the huge expansion of the area between our house and Randy's Steakhouse, with loads of shopping and fun things to do

- adopting two kids, including one of a different race who fits right in

- spending time together on Capitol Hill, lobbying for adoption tax credits

- new karate belts

- resurrected clogging duets

- becoming a chief executive, then retired, and later self-employed

- becoming an author

- becoming part of the Mary Kay family

- Messiah duets

- teaching voice lessons

- reuniting with friends and family

- discovering a passion for genealogy work and learning cool stuff about my ancestry

- being alive long after my expiration date, and keeping my quality of life

and on and on and on!

It's been a good ten years since our first dinner at Randy's. It's been a good nearly quarter of a century since our first date. It's been a great nineteen-year "permanent date" since the day we were married. Very different than expected, but nevertheless very blessed, with much to look forward to.

...and TWENTY!!!

Yep, I'm at the 20-month mark today!

This was an important milestone for me (actually, each day that I am still drawing breath is an important milestone, but...) because I was told that most glioblastoma multiforme studies show a break point among the treatment groups at 20-24 months after diagnosis where the curve flattens out and there are very few or no further tumor recurrences or deaths. It doesn't mean that I am cured (still need prayers), but it is certainly an encouraging sign.

This "birthday" weekend was another reunion of sorts. We traveled down to The Woodlands, just north of Houston, where we lived for a few years before coming to the Dallas area. We stayed with my mom, and we attended church with her to see one of our friends' sons report on his two-year mission, which he served in Canada. I remember when he was a preschooler, and it was so fun to see him all grown up and doing so well. My friend had the typical and well-deserved "returned-missionary-mom" glow, and I couldn't help but hope that I would stick around to experience the moment when my son returns from his mission. That would be fifteen years from now, which seems like a long shot, but I remember when 20 months seemed like a long shot.

I also got to spend time with another friend, who came in from California for the same event. I saw her daughter, who recently graduated from college and is starting her master's degree program soon. I thought of my own daughter, who just turned two, and hoped that seeing these milestones among my friends' kids would end up being symbolic of what my own milestone today might portend. (If not, I'll just have to haunt my kids when they have special events!)

To celebrate this milestone I have added a feature on this blog site to help support some very relevant research that is being done to find a cure for my cancer. There are two specific funds that are worth supporting. One is Dr. Samuel Hassenbusch's fund at MD Anderson. Dr. Hassenbusch is a GBM survivor who has a vaccine treatment that is very promising. The other is Dr. Karen Fink's fund at Baylor Medical Center. Dr. Fink is my neuro-oncologist, and is very involved in research. In fact, the experimental protocol she is using on me has kept me alive and well in order to celebrate today's milestone. Please check out the links to the left for donation forms and instructions. Dr. Hassenbusch's form is pretty self-explanatory with mailing instructions; Dr. Fink's form doesn't have the mailing address printed on it, so scroll all the way down on the left of this page, past the archives list, to find out where to send it. They will send you tax receipts, and the donations go directly toward research that may very well be the answer to our prayers for my life. Any and all would be very much appreciated!

Orange is the new black?

Nah -- it's just another step closer to black! (In karate, at least!)

My son and I had our belt tests today, and are now sporting orange belts! It's not only fun for us to do this together, but it's the ultimate neuro test, challenging memory, balance, coordination, and strength. Like clog dancing, it's life-affirming and reassuring and good for body and mind. There was a time when it looked like I wouldn't see this day, let alone be of sound mind and body, so it's more than just a new belt and certificate to celebrate.

We have our sights on purple now, which is especially exciting for me because I stopped at the orange belt level twenty years ago. So this is new territory for me now that I am older and bigger with less of a brain. Plus at the purple belt level we switch our uniforms from white to a more flattering black (no more Sta-puff Marshmallow Ninja), which is the biggest motivator of all!

So let's see...in the last 30 days I managed to pass my MRI test, my neuro test, my blood tests, and my belt test. This is a good trend...hope it continues!

Good labs!

One step closer to reaching a good milestone! My labwork came back good this time, so I am cleared for my chemo infusion next week!

So far (knock wood) I have been able to follow the protocol we started last October with no interruptions in treatment. There have been some times when we came close to having to suspend treatment, but I always bounced back just in time. It's a prayer thing. As a friend of mine said about her husband's good news, "Miracle Accepted"!

Just a few more weeks (almost 7 to be exact), and if all goes well I might be able to transition from "recurrent tumor" to "successful treatment protocol; no evidence of disease progression; recommended for maintenance and/or monitoring."

Huzzah! (Thanks, and keep the prayers coming!)

In a weak moment I have written a book...

"In a weak moment I have written a book..." - Margaret Mitchell

This has become one of my favorite understatements.

I beat the odds and survived long enough to turn forty last week, and we celebrated with a family trip to Georgia. Being a superfan of Gone With the Wind I wanted to go to Atlanta to visit the land of Tara, and "The Dump" -- the apartment where Margaret Mitchell wrote the book. She was almost a quadragenarian when it was published. She didn't have a brain tumor, so she took ten years to write it while convalescing from an injury.

It was fascinating to learn more about the life of Margaret Mitchell, and the process of writing and publishing Gone With the Wind. Not only because it is my favorite novel, but also because I could relate to being in a weak moment of recuperation and writing a book. In fact, we also visited the Liahona Bookstore in Atlanta, where copies of my book were being sold, and I signed some copies and chatted with the management and staff to thank them for carrying it.

We also visited Jonesboro, to visit the Road To Tara Museum, and to dig up some of the "red earth of Tara", which gave Scarlett O'Hara her strength.

We stayed in Macon, Georgia, at the historic 1842 Inn, an antebellum home that avoided being destroyed by Sherman's troops during the Civil War. (It also avoided being destroyed by my two children, thank goodness!)

We chose Macon, because my brother Jim has just started a Moh's surgery fellowship there. It was nice to see Jim and thank him for being part of the reason I was able to have a 40th birthday. Without his insistence that I was having seizures, I would have been left to rely on the ER doctor's advice that my symptoms were probably just something weird that would go away by itself in six months (that advice would have killed me). Jim also let me cream him in a game of Scrabble.

We had more time on the road again as a family, more use of the spray bottle, and more whinnying when we saw a Ford Mustang driving down the road. The coolest surprise on the trip was my son's high interest in the movie, Gone With the Wind, and his insistence that we watch it together on the little portable DVD player.

Now that I am forty and still alive, the next question is my next book. I have entertained some ideas, but just like in my B.C. days my family and my work have taken most of my time, and the other stuff of life easily takes the rest of it. And I'm not on as many steroids, so I'm not up writing at 5:30 am like I was in my post-op days! I have to keep Ms. Mitchell's quote handy as a reminder that I should not wait for my next "weak moment" to write another book. And I shouldn't wait ten years. Even though things are looking as good as they can for me right now, I should keep the cancer glasses in place, to motivate me to do things while I still can.

After all...tomorrow IS another day, but we don't know what it will bring, except perhaps a string of yesterdays full of "oh, darn -- I should have________".

Q-U-A-D-R-A-G-E-N-A-R-I-A-N

quadragenarian: (n) a person between the ages of 40 and 49; not commonly found among GBM patients who were diagnosed in their thirties.

Today's MRI scan looked "beautiful", in sharp contrast to my roots that need serious touching up (Carlos has been booked solid). But hey -- at least I have hair! And the little gray straggles remind me that I will likely reach quadragenarian status on Wednesday (assuming I make it home safely in traffic)! We'll have an early celebration tonight.

Lab results

This was the first chemo cycle in a while that didn't have bad labs to keep me in suspense over my treatment schedule. Upon my return from our Utah trip I headed for the lab to see if I am healthy enough to get my chemotherapy on Monday (assuming the MRI keeps showing that the chemo is working). I went in on Wednesday and then nervously awaited the phone call on Thursday to get my results...and then when I didn't hear anything I figured no news might be good news.

On Friday I finally got the call. White blood cell count was great. Neutrophils were great. Platelets were great. Clinical chemistry panel was "perfect". Who'd have thunk I'd been shooting up cytotoxic chemicals for the past nine months?

My other family members have been dealing with colds, allergies, migraines, heart disease, stitches, and all kinds of stuff. Except for -- well, you know -- the catastrophic grade IV brain tumor (which didn't even show up on the last MRI), I'm the only one who feels healthy. After 19 months of cancer treatment, I still have more hair and energy than my husband!

...and NINETEEN!

I know...it's actually 19 months and one week!

(Since my diagnosis, not since my last blog post!)

I've been a tardy poster (again) because I've been a busy girl!

I spent my 19 month milestone at a wonderful family reunion in Utah. Our trip was a reunion in lots of fun ways.

First of all, there is nothing like bonding with my husband and kids on a 20-hour road trip from Texas to Utah. We saw beautiful scenery going through western Texas, into New Mexico, and through western Colorado and eastern Utah. We spent a little time on historic Route 66 and stayed overnight at the historic and kitchy El Rancho Hotel in Gallup, NM. We learned the value of a spray bottle of water for resolving sibling disputes in the back seat (much more amusing and nicer than yelling at the kids). We enjoyed seeing our son get so excited as we passed by beautiful rock formations and arches, and playing the game of whinnying anytime we spotted a Ford Mustang (my husband's favorite car). We were also pleasantly surprised at our daughter's decision to be potty trained on the trip. (That was easy!)

The official reunion was for my paternal side of the family. I hadn't been to one for a long time, and since they are only held every couple of years I certainly didn't want to miss this one. My paternal grandparents are deceased, but we were fortunate to be surrounded by their brothers and sisters, my dad's brothers and sisters, and cousins galore (and their kids). We had so much fun being among a huge crowd of people who loved each other and shared so many memories together. Some of us commented about how that must be what heaven will be like.

A side benefit was the opportunity for a mini-reunion with some of my husband's family. We stayed with his parents, and we were able to see his two sisters, who live with their families in Utah. One of his brothers came in from Michigan, and one came in from Nevada, so we had more opportunities to feel the love.

I had a brief lunch reunion and book signing with support group members while I was there, and before we knew it we were off again for the ride home. As always, these trips are never long enough, especially since I would have loved another gaggle reunion or a Cloggers West reunion or a myriad of other opportunities while we were in Utah.

Our trip home was delayed by another "trip" -- this time it was my son landing face first on the only part of his grandma's sofa that wasn't soft. I had to hold his hand and try to comfort him as the ER doctor put three stitches into his upper lip. He was hurting and terrified, but he was a brave little guy, and he was happy to go home with his glove "balloon" and a new teddy bear and truck (thanks to some kind folks who donated gifts for pediatric emergency patients).

The delay meant getting home safe and sound but very late, so it was nice to be snug in our own beds again. And we think the stitches have finally cured my son of his thumb-sucking habit. All is well.

My next adventure is a trip through the MRI tube this coming Monday. I am once again at another fateful nine-month point (more than nine months since my last recurrence was confirmed) and I am once again leaning on prayers and hoping for miracles. After all, I've made it this far!

Whew

Dad's surgery went well -- a very "boring" quadruple bypass, according to his surgeon. Not surprisingly, of course, because once again our family has been sustained by faith and prayer.

Plus...hey, it was a NO-BRAINER!!

The Wizard of Oz

It's funny how sometimes things fall together around a common theme. It's nice, because I'm always searching for themes for birthday parties and Halloween and stuff like that, usually many months before the event.

It looks like this year we should have a Wizard of Oz-themed Halloween. We loved the stage show, Wicked, which is a prequel to The Wizard of Oz. My son even likes to sing songs from it every now and then. A few weeks ago I found some red glittery shoes for my daughter on sale, along with a t-shirt ideal for my little-league star son: it had baseball graphics on it, with the slogan, "There's No Place Like Home." And we don't live in Kansas, but it's that time of year when we have exciting weather in Texas. So it's been on our minds.

Speaking of minds, I figured that I would be the scarecrow: "If I only had a brain" (at least a cancer-free one).

Our prayers have recently turned to my dad, who is having heart surgery this week. Unlike his daughter (the professional patient) my dad has never been hospitalized before, so it's a doozy of an adjustment. I'm hoping that he will feel the same strength and comfort that has carried me through my ordeals, which emanates from the faith and prayers of many.

Dad's situation is sobering, but since I have learned to instinctively extract something light out of heavy situations, it occurred to me that we now have a tin man for our ensemble: "If I only had a heart" (He has a real heart in the good sense, but anatomically speaking, he'd like a disease-free one).

We can't double up our parts, so we have to summon our own courage (which again, is fueled by faith and prayers). The part of the Cowardly Lion remains to be cast. Once in a while we torment my youngest brother, a very eligible bachelor of twenty-six, teasing him about how Brigham Young once declared that an unmarried man of that age was a "menace to society". The reality, of course, is that all good things will happen in their right time and way (as I learned during the long wait for my children). My brother is a good sport, so maybe he'll indulge us and be the guy in the lion costume wishing, "If I only had the nerve" (as well as the right woman in his universe).

The nice thing is that we don't need to traipse down a yellow brick road in search of a fake wizard. Instead, we walk by faith down the paths of life, knowing that Someone very real knows our needs and provides amply. We walk arm in arm with loving family and friends who are always there to support us and help us.

Hello from Chemo Land

This is an historic moment...the first time I have blogged while hooked up to an I.V.

The "walking miracle" (my mom's pet name for me) is now sitting in a recliner, receiving ALL of the scheduled chemotherapy, thanks to a full rebound of my white blood cells and platelets. I'm no longer between a rock and a rock, because one of the rocks was moved. (Not a surprise; faith can move mountains, so it can remove a silly obstacle like damaged bone marrow.)

I also managed to dodge my daughter's high fever and virus last week, so that I could remain infection-free. Something hit me pretty hard on Sunday with a cough and terrible sore throat, but it's gone now. The whole path was cleared to make it easy for me to come in and sail through my neuro tests (the three words today were baseball, giraffe, and avocado) and receive my chemo.

I have spent most of the four-hour drip doing work on my laptop, so while I was in the neighborhood I thought I would pop in and give more BIG THANKS for all the faith and prayers that have been offered on my behalf. Once again, it worked!

In a box

We're halfway through a good news/bad news week.

My son and I completed our first belt test last Friday and we now sport our fashionable yellow belts (good news). Several days later I am still sore, but it was another fun memory moment, and now I feel like I have a big "Livestrong" bracelet around my waist. The karate test felt like the ultimate neuro test, which was reassuring. My son also feels like he accomplished something big. Now - carefully - we are moving on to the orange level.

Our refrigerator/freezer died this weekend (bad news), but on Monday we found a really nice new one on sale, making it affordable to replace both the appliance and all the food that we had to throw out (good news). And to make it even more fun, we got a new refrigerator/freezer BOX! My kids think our home is Disneyworld now, as they transform the huge box into a play house, a tunnel, a castle -- you name it.

My daughter's second birthday is today. In addition to the BOX, which she probably thinks came in her honor, she has some little boxes and packages of gifts to open later today. That's all good news.

My labwork this week had mixed results. This time my white blood cell count has increased to the "borderline normal" range (good news) but it might simply be my body fighting infection already (wouldn't be so good news). So I still have to be careful to avoid getting sick. And my platelet count is also too low. That's not good news. Now I have different precautions to take to avoid bleeding and bruising (as in, no karate class today - bad news - but more time to spend with our daughter on her birthday - good news). It also means that I need a really big rebound, really fast.

When my white cell count was a little low they would still proceed with the Avastin infusion, and I would only risk missing out on the Carboplatin infusion, which is added every other time. But I always rebounded in time, so I haven't had any interruption of this treatment protocol. It was comforting to know that there was a possibility of at least getting some chemotherapy. However, because Avastin puts me at higher risk for bleeding they will suspend all treatment if my platelet count is too low. This is the "between a rock and a rock" situation again, where I am really feeling boxed in. I feel like I'm in an old western movie, where I've just walked into a saloon and the bar-keep says, "choose yer poison" (infection, brain hemorrhage, or untreated tumor running amok).

I'm going in for more labwork on Friday, in the hopes of getting a better result in time for Tuesday's scheduled infusion.

Meanwhile, the good news is that I have learned much from experience. I have learned from experience that things are not always what they seem. My perspective is pretty boxed-in, because I don't have the advantage of knowing how this story will unfold, and what is planned for me. As I pondered my situation I remembered all the times when I had the rebound I needed, right when I needed it. I remembered all the people who let me know I was in their prayers. I remembered my doctor's comment about maybe someday down the road, wondering how long I would even need Avastin treatment, if my MRI's keep looking like they did last time. (Not that we would want to discontinue it prematurely, but surely things would be more dire if the last scan didn't look so good.)

Things may be just fine. Setbacks don't have to mean that I'm destined for the "final box" (the one they bury six-feet deep) anytime soon. They just call for more caution and prayer. Meanwhile, there are many possibilities that lie beyond the box of our limited understanding, and those possibilities are usually good news.

...and EIGHTEEN!

My baby brother Blake turned twenty-six yesterday (June 12). And then today I realized that June 12 also marks the completion of yet another six-month chunk of survival since my cancer diagnosis. As of yesterday I have survived eighteen months with a cancer that has a median survival range of 9-12 months. I am four months past the ominous fourteen-month mark, which represented the "significantly improved" average survival resulting from the temozolomide clinical trial. I am a few months away from reaching the point where the statistical survival curve tends to stop its sharp drop and flattens out for a while. And I am officially halfway to reaching the "long-term GBM survivor" milestone of three years.



I could still get struck by lightning today (it's severe weather season in North Texas). I could still die from infection, with my immune system in the tank. Or I could die of shame if I keep evolving toward a Howard Hughes germophobe lifestyle. Traffic, unchewed food, aneurysm during Friday's belt test -- you name it -- I have no guarantees. Nobody does. That's why today is the "precious present". That's why I could joke with the nurses in the chemo infusion room this morning. That's why being with my family is always so fun. (Even when my daughter loaded her diaper, pulled it off, and said, "I'm stinky!" -- and thank goodness Daddy was able to take care of it. ) That's why this evening's karate class was exhilirating despite an intense workout. ("Just be grateful that you can do this stuff...and thank goodness for dietary supplements and Purell hand sanitizer, because the place looks nice but smells like feet.")



And just because I've managed to hang on this long doesn't mean that I get to shed the sense of urgency to get things done. I still have lots of work to do. I still have things to put in order. Things to teach my kids. I still wake up early with a to-do list racing through what's left of my head. No sense in procrastinating the things that should be done now, because none of us knows what's around the corner for us -- good or bad.



Of course, maybe the to-do list is helping to keep me alive. My brother Jim told me about a man who outlived his prognosis because he was in the middle of a divorce and didn't want to die until it was finalized (if they were still married when he died, she would get everything). I've heard of many noble reasons to live ("my daughter is getting married next year, and I want to be there," "I'm staying alive to see my son graduate from college," etc.), so it was kind of funny to hear of a case where someone's motivation was spite. My primary motivation is to be with my family--because I like them so much. I want to raise the children who were given to me to raise. I'd also like to serve a church mission with my husband after the kids are grown. And I want to write more books. And, okay, I'd like to earn my black belt, too, and sing Messiah again. And grow really old.



But to be completely honest...when mortality rears its head at me from time to time, those motivators cross my mind only briefly. I will still go on, long afer my body wastes away. Somehow I know that my family will be okay. (Plus I would haunt them anyway, to make sure they were!) And someday we will be reunited and enjoy the blessings of being sealed together for time and eternity. My talents also get to come with me, hopefully to be put to good use. (Maybe I'll get a chance to sing under Handel's direction.)



My bedroom closet, my office, and other household chaos are what actually rise up as motivators, because they are scarier than death itself. The very idea of languishing on my death bed, surrounded by relatives and friends who are tripping over piles of junk to see me, is beyond horrifying. Leaving my poor husband to sort through all this stuff would be awful. If spite can keep someone alive longer, surely chaos screaming for order will buy me a few more months. It puts me in kind of a funny dilemma, though. ("Do I get this all finished and lose a reason to live, or do I keep things a mess and stress out about leaving it that way?")



Of course, I can't ignore the overwhelming number of prayers that have been -- and continue to be -- offered on my behalf. I'm sure those have more "staying power" than worrying about a messy closet. The tremendous faith exercised by so many, and the good will and pleasure of the Lord, have put these other factors (medical technology, favorable conditions, motivation, and a craving for antioxidants) together and blessed them for my benefit. And they will continue to do so for as long as is needful--so keep them coming! Let's try for eighteen years, instead of months!

Things I can and cannot do

Today's lab report: my white blood cell and absolute neutrophil counts are still too low. (Darn!) I am very vulnerable to infection and illness, and I have to take neutropenic precautions. That's bad.

But everything else looks good enough for me to have my Avastin infusion tomorrow. That's good!

So I CAN:
- continue my chemotherapy schedule uninterrupted for now;
- - use this as an excuse to make Prince Jared clean the bathrooms, change our daughter's diapers, and do the laundry;
- go in with my son for our karate belt test on Friday (I guess with a mask on), since I still have platelets and red blood cells; and
- feel less guilty about having a "family only" party for my daughter's birthday this weekend, instead of filling our house with two-year-old's.

But I CANNOT:
- spend a lot of time in public places (should avoid it as much as possible);
- eat raw fruits and veggies or be around flowers and plants (anything grown in dirt)
- be around recently vaccinated or sick people (I break this rule to be near my kids);
- let too much time lapse between hand-washings;
- or do anything else that increases my risk of germs.

I have visions of myself walking around like Michael Jackson with gloves and a mask on, but I guess good nutrition, vitamins, liquids, and rest are a more practical approach.

But hey - at least I CAN proceed with my treatment for now, and I have two whole weeks to try and bounce back before my next infusion.

Life flashing before my eyes

Despite my recent "good news" MRI scan, I thought I was going to die this weekend.

For one thing, it just so happened that while my white blood cell count was tanking, my two children both got sick. Jacob started coughing and sneezing and complaining of ear pain, and Emma spent the day with me on Friday with a low-grade fever and diarrhea. And to boot, I have not been able to sleep more than five hours before I awaken to a rush of adrenaline and a flurry of things to think about. Foremost in my thoughts are, "Hey, you know, being sleep-deprived is bad for the immune system. Guess I'll sit and stew on that instead of sleeping." So I'm wondering what could possibly be incubating in my wussy immune system, waiting to take me down.

On top of that, I started having rushes of adrenaline that felt like a seizure coming on again. Thankfully it's been so long since I "seized the day", that I can't remember for sure if it's a seizure or if it's some kind of anxiety attack. But on Thursday night it was so bad that I was actually surprised to fall asleep and wake up alive instead of just losing consciousness.

The good news is that I didn't die. (Or at least, I haven't as of the writing of this post.) Instead, I noticed my life flashing before my eyes, which is something that people will often report when they encounter a brush with mortality.

It may actually have nothing to do with thinking I would die, but may actually have germinated a few weeks ago when my dad brought over the old home movies. I saw my first birthday, several Christmases, my horse, and many family gatherings. We also found a videotape of a 1930's radio show performance that we re-created with friends and took to several senior communities back in 1994. (I had to impersonate Kate Smith, singing "Alexander's Ragtime Band.") These were fun flashes that probably put me in that retrospective mode.

Last night we watched The Karate Kid, which took me back to my early college years. I always remember one of my college roommates when I see this movie, because she always tried her best to mimic Mr. Miyagi's quotes, and it made me laugh.

Right next to our game room (where we watch movies) I have my dollhouse sitting on a ledge at the top of our staircase. When I was a kid I was really into dollhouses, and last year it was one of my many sentimental indulgences, finally getting a house for all the miniature furniture and dolls that have followed me around in boxes for decades. It was fun to pause and reflect as I gazed upon it last night.

I spent this morning (early) doing some writing for my next book. Part of it was spent reviewing some past experiences and writings.

About four hours later I noticed my husband getting the kids dressed, and I realized that it was time for my son's baseball game. (I also remembered that I was the snack mom, and thankfully we happened to have enough juice boxes and snack crackers and apples sitting around, so we didn't have to make a mad dash for the store.) Watching my son play baseball is one of my favorite activities. It always takes me back to when his birth mother told us that he would be an athlete. She was right. And I remember those early days of my son's athletic career three years ago. (He is six years old now.) It also reminds me of how baseball was my favorite sport as a young tomboy. If I didn't have to avoid getting beaned on the head I'd be playing it somewhere now.

Today was also the anniversary of my son's temple sealing to our family. He was not yet three months old when he was sealed to us. After the baseball game today we stopped by the Dallas temple grounds and snapped some family pictures. We looked silly standing next to the temple in our Yankees baseball regalia, but it was still fun to be there. We saw a wedding party taking pictures on the grounds, and I was transported momentarily to my own wedding day. Then I spent some time thinking about Jacob's sealing day, and how cute he was as a little baby in his little white suit. I hope that someday when he is grown, he will spend enough time in the temple to learn the significance of the sealing ordinance.

On the way home from the temple we stopped by Tuesday Morning, one of my favorite stores. As we browsed I noticed a bunch of retired Madame Alexander dolls on sale. I did my family's early birthday shopping for me, because I am a huge Madame Alexander doll fan. My dad gave me many of them as a child, and unfortunately I treated them a lot like my Barbie dolls. I cut some of their hair. I would swap outfits among the dolls. I lost some of the shoes and accessories. I role played my favorite stories with them. As I got older I started taking better care of them, and the evolution of my doll collecting history is displayed in my entryway curio. One of my earlier victims was a Madame Alexander "Greece" doll. My great-grandfather is from Greece, so I liked having a doll representing that country. Unfortunately, I liked it a little too much as a kid and so it is not exactly in mint condition anymore. To my delight, one of the dolls I saw on sale was a newer (but still retired) version of the "Greece" doll. In the cart it went. I also managed to get "Sweden" (never had a Madame Alexander "Sweden", but I also descend from Swedes and I have an old/one-legged/one-armed doll that I think was purchased in Sweden); and I also found a cute "Betsy Ross", complete with accessory flag, which I decided was a must-have (after all, next week is Flag Day).

By this afternoon I was pretty tired, but early this evening we headed to our church talent show. My son had practiced one of his favorite songs from school, but he chickened out at the last minute, so I sang "Two Little Shoes" to him instead. And my husband and I donned our clogging shoes and gave "Duelling Banjos" another whirl again. I was back in my high school days again. (Just older and fatter.) I even put ponytails in my hair, which is something I hadn't done in over three decades.

Finally, a big pile of "organization" project stuff had an avalanche in our bedroom. The biggest part of the avalanche (and thankfully an unharmed one) was the wicker trunk containing the remains of Big Bear. (I hear the collective groan from my family members.)

Big Bear is a huge teddy bear that I received when I was two or three years old. I have a cute picture of little me holding Big Bear when he was new (at the time, Big Bear was bigger than me). Since then, Big Bear's fur has completely worn off, he ripped during a pillow fight with my cousin when I was ten, and he was too rotted to sew back together. So he lost a lot of stuffing, and what's left of him is jammed into a kid's size BYU sweatsuit that is safety-pinned to hold him together. He looks pretty nasty, but he was a good teddy bear who served as my companion and my comfort at home, at sleepovers, at camp, and even at college, until I got married (it's no surprise, then, that I call my husband "Bear"). So this ragged flea trap that represents many years of TLC (I'm talking about Big Bear, not husband-Bear) is mummified in its wicker crypt, because it's too ugly and fragile to be useful. But I can't possibly throw it away. (It's like pumping gas. Why do it now, when I've stubbornly refused to for this many years?) My husband would love nothing more than to be rid of it, but he has endured having Big Bear still around in his wicker crypt (just like he always makes sure I have gas in my car). I told him that the only acceptable way to get rid of Big Bear is to bury me with him. But luckily I didn't die this weekend, and I hope Big Bear's great fall during the junky room avalanche was not a foreboding.

Little flashes of life during this weekend that seemed touch-and-go at times. I was happy to have the vitality necessary to do all this stuff, the ability to remember so many moments of life, and the hope of building more flashes in the days, weeks, months, and years to come.

The Bubble Girl

I wish this meant I was just a fairy princess who transports herself around via bubble. But it doesn't.

Last week's results were so wonderful, but today I still need LOTS of prayers! They have me doing weekly labs now, and yesterday's test results came back today pretty bad. My white blood cell and neutrophil counts are really low, so I have to take extra precautions to avoid infection, and I have to hope and pray for another miraculous bounce-back. They will test again next week before my scheduled Avastin infusion, and if I am still low (or if I have gotten sick) my treatment will be suspended. That would be awful, since it's been working so darn well.

So I'm being the bubble girl, trying to quarantine myself from illness. It's tricky with kids and camps and allergy season and insomnia and stuff. But I keep hand sanitizer close by and take my vitamins and one of these days I'll be sure to get enough rest. And I'm leaning on prayer again, so please keep them coming!

Never thought of this before...

...but it came to mind this weekend as we had a family celebration for the naming and blessing of our new niece, who is just a few weeks old.

Little Zoe is so cute and adorable, but as all babies do, she cries when she's hungry or gassy or whatever. I'm sure she is just so fresh from heaven and getting used to navigating her spirit in this new little body and experiencing all kinds of feelings that she isn't used to. And I never thought of this before, but I was thinking how ironic it is that when babies are born, everyone is so happy but the baby does a lot of crying. Then the baby learns to turn to her parents for love, and she starts to discover all the wonderful things about life, and instinctively wants to cling to life.

Later (hopefully a lot later), when someone dies, it's the opposite. They lay aside their mortal cares and their worn-out bodies. They reportedly feel free, happy, and peaceful, and everyone else is doing the crying.

Fortunately, depending on where we are in this spectrum we can look forward to the promise found in Revelations 21:4:

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.