Monday, July 31, 2006

Scrabble Therapy

Today was my grandmother's birthday. I won't reveal her age, but I will say that I descend from trees. My maternal lineage is comprised of women who easily and gracefully outlived their men, visiting hospitals only to see patients or give birth. However, there must have been a significant dilution of the gene pool, because I never did give birth and I spent my time in the hospital having a malignant brain tumor removed at age 38 (my mother's age when she started law school).

My grandmother, mother, and I also represent three generations of Scrabble fanatics. We like to play together any chance we get, and we are friendly but fierce in our quest for a seven-letter word that uses a "Q", "Z", "J", or "X" and fits nicely on the triple-word space. We each tap our fingernails on the table as we study our letters; we never remember the agreed-upon protocol for choosing who goes first (the one who draws closest to "A" or the highest point value letter); we each groan when the letter bag is emptied, and we have incredible vocabularies. (How many of you know that "wadi" is a word? It's defined as: 1. a valley, gully, or streambed in northern Africa and southwest Asia that remains dry except during the rainy season; 2. a stream that flows through such a channel; or 3. an oasis. Mostly, though, it fits nicely in weird spaces to yield maximum point value.)

Mom and I decided to go to Arizona and visit my grandmother this past weekend to play Scrabble with her as a way of continuing my birthday celebration and beginning her birthday celebration. It was a blast! We all knew the value of making hay while the sun shines - or in other words, playing Scrabble while there are enough glial cells left in the brain - so we jumped at the opportunity to continue this long-standing ritual while we are all still here and able.

Scrabble is reassuringly therapeutic, because it is a great neuro test. Organizing letters into words, remembering one's vocabulary, and quickly calculating scores requires a certain level of neurological capacity, which I was happy to confirm. I can't remember how many games we played, or how many I won, but we played many games and I won at least a few of them. My goal was to score higher than my weight during each game, and I was happy (in more ways than one) to be able to accomplish that goal each time we played.

And of course, in my habit of drawing analogies and lessons from everything around me, I found that there is much to be learned (besides spelling and vocabulary) from Scrabble. The biggest lesson I learned from Scrabble is about making the best out of the luck of the draw.

It's not uncommon during play to bemoan the random letters that we get to work with. Sometimes we are plagued with all vowels or all consonants, or we don't get enough high point value letters. Sometimes we get the "Q" without ever getting a "U". It can be brutal. Sometimes we get the "J" at the very end, when the board is full and someone else is going to use up their letters and end the game and leave us with an eight-point penalty.

Sometimes we feel limited by the way that the board is filling up (or not filling up). The ideal game is one where we are spread all over the board, so we have good access to the double/triple value squares. It's also ideal to have lots of root words placed in convenient locations, giving us opportunities to expand by adding an "S" or some other consonant that enables us to make two words instead of one. When the board is too limiting, it becomes a challenge, even when the letters can form a great word.

Sometimes we feel victimized by others. "You took my word!" was a common cry, often with facetious threats of hand slapping, whenever someone played a word in a spot that was in the designs of the next player. The punishment is usually a painfully long wait for the next player to come up with an alternative word.

All of these forces combine to dictate whether we have a "good" game or a "bad" game, and we are at the mercy of these elements, which determine whether we will win. At least I thought so, until I started playing Scrabble on the computer a few years ago.

When I played against "Maven" - or whatever the computer's name is - I noticed that none of these factors affected their play. The computer received random letters, just like I did. The computer was at the mercy of my plays, just as I was at the mercy of its plays. And yet the computer would always beat me. Why? Because it could play a winning game, regardless of the circumstances. The computer was able to identify words that could fit in any situation, using any combination of letters. It knew how to best leverage even the low point letters for maximum value. It had a vocabulary that goes far beyond mine. I was amazed at what it could do with stupid letters and limited space.

Of course, life is like Scrabble in this way. You don't have control over the letters that you get to play with. You don't have control over what other people do, and sometimes their actions affect your plans. Everyone who plays has these circumstances, so it's not the circumstances that determine success or failure. In fact, one of the games I lost was one where I started the game with a 50-point word. I had great letters but I still lost because someone who had all low-point letters was still able to make a 60-point word ("toileting" - which used up all her letters for a 50-point bonus).

The ones who win consistently are the ones who are knowledgeable and open to all of the possibilities available. They know how to leverage what they have. They know how to be flexible when the unexpected happens. They don't sink into an all-vowel pity party and give up on the game.

Those who succeed in life have the same attributes. They are knowledgeable and open to the possibilities before them. They know how to leverage what they have. They know how to be flexible when the unexpected happens. They don't have pity parties, and they never give up.

Thursday, July 27, 2006

Death in the Family

Nemo the betta fish finally died. As I mentioned in a previous post, he lived much longer than average for a betta fish, despite the odds being against him.

My son previously lost a goldfish after a couple of weeks of ownership, and he still does the lip quiver and tears when "Shark" the goldfish is mentioned. That was our first experience teaching Jacob about death, and now the subject has come up again with his beloved Nemo. Jacob is taking it a little better this time, because he has a better understanding of how this works: we all have a time to be born and receive a body, and we all have a time to die and return to our Heavenly Father. It's all part of a plan. Even so, Jacob is sad, and we know that when someone dies (even a little someone with gills), we feel sad because we miss them. But we have hope that all is well for them, and there is the possibility of a joyful reunion someday.

The grief over losing a fish is not the same as the grief over losing a human member of the family. The latter carries a much heavier weight. But without trivializing it, the basic concept is the same: it's part of a plan, it happens to all of us, it is worthy of grief because we value life and love, and there is ultimate hope for better things as the plan comes to its full unfolding.

I got a copy of a beautiful poem from a dear friend. I don't exactly hear Nemo the fish blub-blubbing these words, but it's so awesome that I have to share:

Death is Nothing At All
by Henry Scott Holland
I have only slipped away into the next room.
I am I, and you are you.
Whatever we were to each other, that we are still.
Call me by the old familiar name.
Speak of me in the easy way which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed,
At the little jokes that we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without an effort,
Without the ghost of a shadow upon it.
Life means all that it ever meant.
It is the same as it ever was.
There is absolute and unbroken continuity.
What is this death but a negligible accident?
Why should I be out of mind because I am out of sight?
I am but waiting for you for an interval,
Somewhere very near, just around the corner.
All is well.

Wednesday, July 26, 2006

Birthday Therapy

Well, you know, one basic way to stay alive is to keep having more birthdays. So I had one yesterday. It's a fun survival strategy.

Actually, we did so much celebrating over the weekend, you'd think I'd have advanced two years instead of one. But I'm "only" 39. If you're a lot older, you might think I'm "just a baby". If you are a lot younger, you might think I'm middle-aged (I WISH!!). If you're my age, you might be amazed at how we got here so fast and so easily. If you have cancer like me, you may just want have as many birthdays as possible, so age is just a number. When Mary Kay Ash died (founder of Mary Kay Cosmetics - the best company my husband has ever worked for, so buy lots of their stuff!!!), none of the obituary reports contained her age, because she never let anyone know it. It was just a number, and what mattered more was all the good that she did with the time she was allotted.

The big 4-0 is next year, and while some people are traumatized by "milestone" birthdays, turning forty would mean that I had beaten my prognosis and then some. So I am eager for that milestone birthday. My dad gave me a hug and wished me happy birthday and said, "May you stay 39 the rest of your life," but I laughed and said there was an awful way for that wish to literally come true, so I'd rather let those numbers keep (s..l..o..w..l..y...) passing by! Someone at my church is turning 89 this week, and I am SO jealous!!!

We celebrated with 39 hours of festivities over the weekend, preceded by a gorgeous bouquet of roses from a dear friend. Our festivities started late Friday afternoon with the adoption of Chip, a 3-year-old beagle with an adorable personality. He is a wonderful little brother for our 14-year-old dog Buster (who is also outliving his prognosis). Together they remind me of the power of one's "inner beagle". After we brought Chip home and introduced him to his new surroundings, we headed off for dinner. My husband, Jared, found a restaurant nearby that does family-friendly karaoke every Friday night, and we had a really fun party there!

On Saturday morning Jared and I spent some time at the temple, then hit some garage sales (garage sale-ing is about as big as high school football here in North Texas), and returned home in time to go with my brother and my mom to the local antique mall (to look for 39-year-old stuff). We shopped and lunched at my favorite lunch spot (I crave Potbelly's "skinny" turkey sandwich like a pregnant woman: on wheat, no cheese, just a little mayo, lettuce, and tomato), and then we headed back home to watch my favorite movie of all time: Gone With the Wind (released in 19...39). After all, "Tomorrow is another day!" (Or so we all hope!!!) Later that evening we had a family party at my favorite steak place, and then I had to scramble to get a workout in before going to bed. (I still have a policy of exercising on the days when I eat.)

We attended church on Sunday, where my son sang with the other Primary children, and he did a charming job. We had a nice dinner at home courtesy of Chef Jared, with lots of family around, and then it was time for birthday cake and a big pile of gifts.

Of course, this was all pre-birthday priming. Yesterday morning I awakened to breakfast in bed, adorned with a rose in a leaded crystal vase, and birthday cards (including a cute one where my son hand-scrawled, "I super love you Mom love Jacob Oakes".)

We then had another beagle miracle moment. We discovered that Chip had "chipped" his way through our fence during the night, and had vanished. Our initial search that morning was in vain. My son and I said a little prayer for Chip's safe return, and I had a feeling of reassurance that it would happen. And sure enough, it wasn't long afterward that we got a phone call from someone whose daughter had found Chip far across town and near a very busy intersection. After some effort they were able to trace him to us via his rabies tag number, and from their account of the morning, this was all happening while my son was saying his little prayer.

My birthday topped off with a family lunch date (Potbelly's again) and dinner at a grown-up dinner & games place (where I considered every game a good neuro test), and then we came home to lots of voice mail and email greetings.

I think if I count up all the activities, gifts, beagle miracles, and greetings, it adds up to 39 steps to turning 39. Not Hitchcock's 39 Steps, but a fun and very non-scary string of celebrations as the odometer of life clicks off another number. Each day is a gift and a miracle in so many ways, and I have been blessed to receive over fourteen thousand of them. And I got another one today!

Wednesday, July 12, 2006


July 12, 2006: exactly seven months ago, on December 12, 2005, I had brain surgery and learned that I had cancer. As Lance Armstrong puts it, it was the day I "started living".

  • I have taken a total of 13,080 milligrams of Temodar chemotherapy, with much more to go.
  • It made me throw up once.
  • My "mange" is growing back -- hooray -- but my roots are definitely growing faster.
  • I have had 21 blood tests since January. I have another one tomorrow. (My veins seem to know when it's Thursday, and they start perking up.)
  • Only one blood test showed low white blood cell and neutrophil counts.
  • No blood tests have shown decreased red blood cells or platelets so far (knock wood).
  • My surgical scar looks great (if you can even see it), but my head is still really tender and my skull feels really bumpy where I was carved open. I still avoid sleeping on my right side as much as possible.
  • I still have jaw discomfort from the surgical incision (I rarely chew gum and I dread eating anything tall.)
  • I can count backward from 100 by sevens REALLY fast (100, 93, 86, 79, 72, 65, 58, 51, 44, 37, 30, 23, 16, 9, and 2: it took longer to type it than to say it...)
  • I have a 4.0 GPA on my monthly neuro tests. Maybe higher, since they usually tell me I got an "A+"
  • I can sight-read music better than I did before surgery, but my reading comprehension is (slightly) worse.
  • I have taken three different anti-seizure medications: Trileptal, Dilantin, and Keppra.
  • I have had 2 C-T scans and 8 MRI scans since last November. My next MRI scan is scheduled for August 10.
  • I have said the words "avocado", "tree", and "no if's, and's, or but's" in my neuro-oncologist's office about a half-dozen times each.
  • I have stuck out my tongue at some of the best doctors around -- and at their request.
  • I have forgotten where I put my keys, shoes, wedding ring, and watch more times in the past seven months than I had in the previous 38 years of my life.
  • I can still sing most of a one-hour Handel's Messiah performance and anything I ever recorded with Evening Song choir -- from memory -- and I can usually recite most of the opening paragraph of Gone With the Wind ("Scarlett O'Hara wasn't beautiful, but men seldom realized it when caught by her charms as the Tarleton twins were. In her face were too sharply blended the delicate features of her mother, a Coast aristocrat of French descent, and the heavy ones of her florid Irish father...") as well as the FDA's definition of a medical device complaint ("any written, electronic, or oral communication that alleges deficiencies related to the identity, quality, durability, reliability, safety, effectiveness, or performance of a device after it is released for distribution"). I can remember some phone numbers that I rarely call and/or haven't called in years. I also remember the address of the house I lived in when I was five years old (98 Stonegate Road, Buffalo Grove, Illinois) and the three "test words" from my last neuro exam ("tree, monkey, avocado"). But my short-term memory is sometimes frustratingly flawed. ("Dangit - did I take my medication today?")
  • I can walk a straight line on my toes or heels, even with mules on.
  • I have submitted four magazine articles for publication. One has been accepted (with modification).
  • For at least three months I went without cooking a single meal, but I ate better than ever.
  • I have had all four of my bathrooms professionally cleaned (for free) at least four times each.
  • (Too many acts of service to number)
  • I have had more than a dozen out-of-town family members and/or friends come to visit me in the past seven months.
  • I have sung five different solo or duet performances this year.
  • I have clog danced to "Duelling Banjos" with my husband more than a dozen times this year.
  • I haven't missed a day of exercise in 68 days. My previous streak lasted three years, and I am determined to live long enough to beat it.
  • This year I have watched exactly zero episodes of "American Idol" - my once-favorite show.
  • I have purchased more than a dozen books about cancer.
  • I have read less than one.
  • I have raised nearly $1000 for the American Cancer Society.
  • I have spent about $150 on Lance Armstrong "Livestrong" merchandise.
  • I received three free copies of Lance Armstrong's books: one from a cousin, and two from the cancer center.
Today is considered my "midpoint" day, because the average prognosis for this cancer is 12-14 months. It comes from the Temodar clinical study, which showed an average lifespan of 12 months for radiation-only patients vs. 14 months for radiation-and-Temodar patients.

It is a time of reflecting back on seven months' evolution from "shock and awe" to feisty fighter. Seven months ago I had no idea what chemotherapy and radiation would be like; now I feel like a seasoned veteran. I am doing a lot better than I expected at this stage. My treatment has been amazingly tolerable. I am aware that it wasn't so very long ago that the prognosis for this type of cancer was half of what it is today. Technology and prayer have easily carried me this far with no end in sight (so far - knock wood).

This is also a time to realize that -- oops -- I still haven't done everything I wanted to do while time is a-tickin'. I've done some great stuff, and I have found so much more meaning in every day that passes. I give thanks for every day of my life, and I am blessed to realize how precious life is. But I am anxious to get some things finished and tied up, especially since I find that the more prepared I am for something, the less likely it will happen. Even so, I try not to be too concerned that I have eaten up half of that 14 month timeline. As I said in a previous blog, I can think of myself as being halfway through "the rest of my life", or I can think of myself as being halfway toward beating my prognosis.

And finally, I must report that these past seven months have taught and given me much more than I have time or space to list. Suffice it to say what a friend (and fellow cancer survivor) said to me shortly after my diagnosis: "Cancer gives more than it takes."

Sunday, July 02, 2006

The Better Idea

A couple of months ago my son lost his little "CTR" ring (CTR = Choose The Right). It's a ring that he got from his Primary class teacher for his birthday, and it is a nice reminder (a la WWJD bracelet) to make the right choices. Of course, for this five-year-old child, it started out as a reminder of - "Cool, I have something to play with on my hand!"

It was no surprise, then, when he lost his ring somewhere upstairs in our house, probably in his bedroom or playroom. We looked for a while, and then I decided this was an opportunity to teach him to pray when he is in need. So I told him about my experience (recorded in an earlier blog) about when I lost my wedding ring and found it after praying for help. Together he and I said a little prayer about how he wanted to find his ring so that he could wear it and remember to choose the right. And then we set out again to look for it. As we continued to search in vain, I kept saying a silent prayer in my heart to please answer this little boy's prayer, so that he will remember that he can always turn to prayer when he needed help. What happened instead, though, is a thought came to mind of another teaching opportunity: the "better idea". After all, how else can you explain to a child about prayers that don't seem to be answered? And besides, it seemed like an important concept for him to understand, just in case his prayers of "please help Mommy get better" don't quite turn out as hoped.

I sat my son down and explained that Heavenly Father always hears and answers our prayers. Always. And he always loves us and wants us to be happy. Always. Sometimes when we pray for something, we get exactly what we pray for. Sometimes when we pray for something, we have to wait a while until we get it. And then sometimes...Heavenly Father has a better idea. He knows how to bless us and help us even better than we know, and so we can trust in the better idea, even when things turn out differently than we wanted.

There have been some heartbreaking situations among our family and friends lately, including devastating miscarriages and stillbirths, and another cancer diagnosis. These are times when prayers have been heard and answered, but in ways that we didn't want or understand. These are times to trust in the better idea. We never know what's around the corner. We never know what opportunities will rise out of the ashes of our disappointment. We never know how our experiences will shape us and lead us toward an unknown destiny. All I know is that the overall plan is one designed for our happiness and for the realization of our ultimate potential. There is a grand plan, and I know that if we were able to see things with a higher perspective, we would understand why even our most devastating moments are still times to "doubt not, fear not".

Losing a child (born or unborn) doesn't seem like a "better" idea than having a live, healthy child. Being diagnosed with a life-threatening illness doesn't seem like a "better" idea than getting a clean bill of health. Taken individually, these incidents are heartbreakingly worse than the alternatives that were prayed for, and they are worthy of sorrow and grief. However, the grand plan is the better idea, and it is a source of trust and hope in the midst of affliction.

My son did ultimately find his CTR ring. It happened differently than we expected, and it took longer than we expected, but he ultimately got what he needed, and he learned some important things along the way. Hopefully each time he notices the ring on his hand he will not only remember that he has a cool thing to play with, and that he will not only remember to Choose The Right, but that he will also remember about "the better idea."