Tuesday, June 26, 2007

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!

Wednesday, June 20, 2007

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.

Wednesday, June 13, 2007

...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!

Tuesday, June 12, 2007

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!

- 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.

- 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.

Saturday, June 09, 2007

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.

Wednesday, June 06, 2007

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!

Sunday, June 03, 2007

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.