Saturday, July 24, 2010

...and FORTY-THREE!

Forty-three years of life!

(I shouldn't be presumptious, because I am posting this with a little more than an hour left before my actual birthdate. But it's close enough.)

My husband and my kids began spoiling me many days ago, and tonight we had a celebration dinner with my brother Mike and his family, followed by ice cream cake at home.

It occurred to me just a few minutes ago that more than one-tenth of my life has been spent as a cancer survivor! Time flies when you're having fun.

One-tenth...and growing!

Wednesday, July 14, 2010

...and FIFTY-FIVE and FIVE and TWELVE!

Fifty-five months since diagnosis. (That would be four years and seven months.)
Five more months until I finish my fifth year of survival!
I hit those milestones on the 12th.

Many of you know that my lucky number is thirteen, because our son was born in the thirteenth year of our marriage, in the thirteenth hour of the thirteenth day of March.

I'm really not into numerology, but I started associating the number twelve with unlucky things. Cancer diagnosis on December 12 (12/12). Tumor progression detected on October 12.

But as with everything in life, it's all in the way we look at things. I also had neurosurgery on 12/12, and emerged high-functioning that evening. The October 12 tumor progression led to the use of Avastin, which worked well enough to keep me stable ever since. And it finally occurred to me (after all these months) that I keep looking forward to another "12" on the calendar. Another month of survival. (In fact, so many now, that it seems silly to count survival in months!)

It's pretty darn lucky!

Tuesday, June 29, 2010

...and FIVE and SIX!

I remember celebrating my son's fifth birthday, just three months after being diagnosed with cancer, and being grateful for the opportunity to be there. My daughter had not yet celebrated her first birthday, and so any ideas about celebrating her fifth birthday seemed like the stuff of wishful dreams.




More than four years --and many miracles-- later, I found myself celebrating Emma's big five this month. We had a "Princess and the Frog" themed party, and I made my first attempt at a doll cake:





(Now try and tell me this wouldn't obviate the next neuro test!)


Meanwhile, I was also celebrating #6. That's my son's baseball jersey number this year. I watched him earn a second game ball as their team came back from their losing streak to handily win the next several games. During the playoffs I had another chance to sing the national anthem. His team ended up finishing the season in fourth place -- which was good, considering that they were in ninth place (out of nine teams) during the first half of the season. He learned to lose with grace and to win with humility...and to enjoy the chance to play, no matter what the outcome.


This evening we celebrated the end of the season with a team party. We went to a park and played a hilarious scrimmage game of team players vs. moms and younger siblings. They used wiffle balls and bats, making it brain-friendly. I managed to hit the ball each time at bat -- which should also obviate the next neuro test. After the game, we went crazy with cupcakes and water balloons. It was one of those "had-to-be-there-to-appreciate" moments, and became yet another treasured memory to save in (what's left of) my mind.








Saturday, June 12, 2010

Living didn't count

The title punctuates the need for punctuation! What I meant to say was:

Living. Didn't count.

Actually, what I meant to say was that I was so caught up in living this great day that I nearly forgot that it was the 12th! It took a while today before I realized that --wow-- I can count four and a half years (54 months!) of cancer survival behind me.

We started our day at a very special ballpark that gave my son's team a little taste of "big guy baseball." Each team in the league gets to play one game on this field, complete with announcers and a large lighted scoreboard and great seating for the fans. Technical difficulties prevented the playing of a recorded version of the national anthem, so I asked if they wanted a live version. They handed me a microphone, and now I can say that I sang the national anthem at a baseball game.

My son's team was missing several players and they faced a formidable team -- and they got slaughtered (11 to 1). But they played with all their hearts and managed to pull off some great plays and enjoy the experience despite the disappointing outcome. (It was a good life lesson for all of us.) Jacob had grandparents and aunts and uncles and cousins to cheer him on, and after the game was over we all saw his coach award him the game ball.

After a celebration pizza lunch we went across town to watch my niece play the violin at a Music Fest recital. When we got home we were reminded that we had ordered some fajitas for a fundraising activity, and they were being delivered just in time for us to feed the new missionaries in our area. We had a great visit with them, and later reconvened as a family to celebrate my sister-in-law's birthday. While together we also phoned my youngest brother, who is celebrating his birthday today far away.

It was a busy day, but one filled with family and friends and new good memories. The best stuff of life!

Tuesday, May 18, 2010

Still crazy after all these years!

That song was going through my head yesterday, as my husband and I both marked the 27th anniversary of our first kiss. We're still crazy in love, and I still look forward to those goodnight smooches and good morning smooches and goodbye smooches and hello smooches and whenever smooches...

Today the song went through my head after (barely) hearing my ear surgeon declare that my six-month-new eardrum has fallen victim to the ongoing effects of radiation treatment. It healed nicely at first, but has since opened up and now we have to figure out what to do next.

"Tell me again -- when did you have radiation treatment?"

"A little over four years ago." I think I puffed out my chest with a little pride when I said that. ("Yes, sir, that was for a glioblastoma.")

I remember a discussion with my brother, who was in his dermatology residency while I was undergoing radiation treatment. I asked him about the risks of skin cancer with so much radiation exposure to my scalp. He replied that he hoped to see me develop skin cancer from my radiation treatment, because it would take about twenty years or so for that to happen! (As Forrest Gump would say, I hope I don't let him down!)

I'm one-fifth of the way there. Meanwhile, I have a new reminder that after all these years, I am still alive to see more crazy long-term effects of treatment. Surely the tumor got it worse, I have to tell myself. (HA!)

Until we figure out what to do next, I can go back to convenient hearing. I have already mastered holding the phone to my left ear, and I'm grateful for good vision, because I rely on closed captioning when I watch television or movies on DVD. I also have a continued excuse to avoid being seen in a swimsuit!

Sunday, May 16, 2010

Twelve and four!

No, it's not our favorite baseball team's losing streak. Another twelve has passed on the calendar...along with four more days! Fifty-three months (and four days) since the diagnosis that changed my life, and all is well!

As always, I was blessed to be able to do more than maintain a pulse. I was able to cheer my son in three more baseball games. I was able to watch my son give a talk, and my daughter give the scripture and prayer in Primary at church. I was able to celebrate one niece's eleventh birthday, another niece's third birthday, my in-law's fiftieth wedding anniversary, and one more Mother's day. I was able to give encouragement to others in person and via email, phone, and (albeit briefly) even television! I was able to sing again, laugh again, and write again. And the list goes on!

Most importantly, I have been able to testify of the goodness of God and the love that He has for all of His children.

Monday, May 10, 2010

Fifteen Seconds of Fame

That's right -- I now have a television credit to my name!

Genentech, the maker of Avastin, has asked me if I would be willing to share my story of brain cancer survival. Of course, I said "YES!" If you are reading this blog you know that I'm hardly shy about this situation, and I am hopeful that this will give me the opportunity to give hope to others.

Last week was my first opportunity to share my story on the local news. The timing couldn't have been more perfect. Mother's Day was approaching, and being a mom to my children is my primary motivation to keep breathing. Last week was also the one-year anniversary of Avastin being approved by the FDA for use in brain tumors. And May is National Brain Tumor Awareness month --although (giggle, giggle) I was ironically unaware of this!

I had also prayed for help to get my house in order.

On Tuesday afternoon I learned that someone from our local NBC station would be coming by around 1:00 on Wednesday to conduct the interview. (Be careful what you pray for!) I sprang into action to make myself and my home "camera ready." Once again, my angel friends at church started offering to come and help. (How do these women stay on the ground?) I graciously refused, thinking I would burn more calories doing the work myself. (I also got assurance that the cameras would not go too deep into the house!)

We were ready on Wednesday. My son was even kind enough to be miserable all night with allergies, and stayed home from school so he could conveniently be here with my daughter and me for the interview. (My husband had meetings to attend, and was unable to be present.) By 12:50 I was satisfied with the way the house looked, I had fed the kids (outside) and dressed them in adorable outfits, and it finally occurred to me that I should choose my own adorable outfit to wear. I got dressed, put my lipstick on, and was just realizing that my shirt clashed with my living room colors when the doorbell rang.

Steve The Photojournalist spent over an hour in our home. He first interviewed me in the living room while the children were in the next room with a movie and promises of milkshakes if they stayed quiet. I told my story and answered many questions about dealing with the diagnosis and going through treatment. I answered questions about faith and prayer. I answered questions about the things I have been able to do since my diagnosis. (That was a long list.) It seemed like we talked forever. I even talked about the years of longing to be a mother before we adopted our children, and then receiving this cancer diagnosis, which created a new longing to remain here and be a mother to my children. And on and on we went.

Then we brought in my kiddos, and they were perfectly charming. We moved into the family room, where Emma read to us on the couch. Then Jacob read the poem that I wrote about them ("Jake the Puppy and Emma the Cat," which has been accepted for publication). Jacob and I even played a little Scrabble together. Steve also zoomed in on some family pictures and my karate black belt certificate. We ended with me and the kids singing our family fight song. It was a lot of fun! Steve The Photojournalist graciously said that he really enjoyed doing this story. I sent him on his way with a copy of my book and the URL to my blog. Genentech also provided the station with background information about Avastin. All of this went to a separate person, who wrote and "voiced" the story on the air. There was a lot of material to digest and make into a story. I wondered what angle they would take.

The segment aired on the 10:00 Thursday night news. We set the DVR so the kids could watch it in the morning. And then we waited, until finally we saw this:

http://www.nbcdfw.com/news/health/Targeted_Therapy_Adds_Years_to_Plano_Mom_s_Life_Dallas-Fort_Worth.html

Yep -- that was it! All that filming was condensed down to just a few seconds. All my blabbing was reduced to a sentence. (Even Steve The Photojournalist was expecting the final product to be longer.) But it was a good experience, and I hope that this brief moment will somehow be of use to someone.

Naturally, I saw a life analogy as I considered the whirlwind of activity leading up to the interview. Think of how busy and agitated we can make ourselves over things that won't matter in the end. Ultimately, no matter how long we get to live, we'll be surprised at how fast it's over. So hopefully when all is said and done, we'll have chosen the right things to focus our story on!

Sunday, May 02, 2010

Don't Cancel When it Looks Like Rain

I have to give credit to my friend Lauralea for sparking this blogworthy thought...

As this weekend approached, our area received weather forecasts predicting severe thunderstorms. A local elementary school cancelled their spring carnival (wasting hours of volunteer effort) in anticipation of the storms. My son's baseball league kept us in suspense about Saturday's opening day games. Several friends had a day trip planned on Friday, but opted out because of the weather forecast.

For several days the sky was cloudy and threatening, but we never saw a storm. I think I briefly saw some light drizzle. That was it! We enjoyed perfect weather as we watched our son play his first game of the season.

Some friends and I were commenting about all of this when Lauralea explained to us that she learned not to cancel things just because it looks like rain. She told us about a time when the young women at our church had to travel for an activity, and the weather got really nasty. However, instead of cancelling the activity they pressed forward, enduring the torrential rains that often seemed scary. Everyone was safe, and they ended up having a very good experience together.

Her story reminded me of last summer, when my son attended scout day camp. One day the camp closed early due to severe weather, and while we all made it home safely, the drive home was indeed an adventure. Camp proceeded again on the next day, but at the first rumble of thunder they immediately shut down and sent everyone home in a panic. This time, as we drove home we heard a second rumble of thunder. And then it was over. I don't remember seeing any rain that day. This was the last day of camp, so my son missed some eagerly anticipated activities.

Meanwhile, our church youth group had planned a handcart trek activity for months, and despite severe weather on the evening before they were to leave, they still got up early in the morning and hiked toward Oklahoma. At some point during the trip the severe weather returned, but miraculously their little camp was spared while the storms raged nearby.

Practically speaking, it's always better to be safe than sorry -- especially when it comes to North Texas weather in the spring. But as always, I saw a life lesson in these experiences. Metaphorically speaking, when life gets cloudy (or even stormy) should we cancel? Of course not! This is the time to press forward and endure whatever we have to face, so that we don't miss valuable opportunities. It's not as dangerous as driving through a Texas storm. We can navigate the storms of life safely, especially as we put our trust in the Lord, who has power to calm any tempest and protect us from harm.

This also reminded me of a line from a hymn that another friend (thanks, Marnie!) shared with me long ago:

Ye fearful Saints, fresh courage take.
The clouds ye so much dread
Are big with mercy, and shall break
In blessings on your head.

Tuesday, April 27, 2010

"Perfectly Stable!"

My doctor didn't waste any time bringing the good news! In fact, she said I could come back "in three or four months," depending on my schedule, so I have earned my longest interval between scans!

Monday, April 26, 2010

Testing...testing...

Tomorrow is MRI day for me and the beginning of two days of TAKS testing for my son. My test is a lot easier for many reasons:

1. My test requires a nap in a tube for about an hour, followed by several hours of waiting until my doctor gets the radiologist's report. Jacob's tests go for two days, and we won't know the results for several weeks.

2. The absolute worst outcome of my test would be a heads-up that I am dying, which is something that we already know will happen to all of us. The absolute worst outcome for Jake would be repeating the third grade (which to him is a fate worse than death).

3. Thinking about my son's TAKS test will not change the outcome of my MRI. But thinking about Mom's MRI could distract Jake and affect the outcome of his test. Fortunately, his most critical test is on Wednesday, which we hope will be after we've celebrated a good result.

4. I am well-acquainted with the prayer cushion that has supported me for more than four years. It has calmed and sustained me through good news and bad news. My son may not have as many people praying for him. (However, I'll be compensating for any gap with my own prayers on his behalf!)

So his is a little harder than mine. But the good news is that we'll both deal with whatever comes from these tests. And in a hundred years, we might not even remember that we had them!

Monday, April 12, 2010

Another twelfth!

I have counted off fifty-two "twelfths" on the calendar, and hope to count off many more. Another month of survival under my belt!

Speaking of belts, our family spent Saturday in a karate tournament in Houston. It was my daughter's first year to compete, and it was the second year for the rest of us. With half my brain tied behind my back, I did one of my favorite black belt forms in the kata competition. It went over like a lead balloon (probably because that's what I looked like in my black uniform) but I was happy to be out there, alive and kicking. I didn't win, but I earned some great feedback from the judge and proved that I still had memory and balance.

The rest of my family (those who are allowed to get hit in the head) competed in sparring, and each of them won 4th place in their respective divisions. In each case they had an uphill battle, fighting against people who were older or bigger (or both). It was daunting to face an opponent who was bigger and tougher, but I was happy to see them fight through their fear. My son used the same approach again to win second place in his kata competition. He was the youngest in his group, and he later said that he made some mistakes in his performance, but he kept going as though nothing could stop him. And nothing did! It was a good lesson for any uphill battle in life.

Thursday, April 08, 2010

Deja vu all over again

This wasn't the beginning of a seizure. It's one of my favorite Yogi Berra phrases.

Today I registered my daughter for kindergarten. It seems like only yesterday when I was filling out my son's kindergarten registration forms, writing the same information in response to "Are there any special things we should know about your child?" ("Please be sensitive to the fact that Mom has cancer.") Back then I wondered who would be filling out these forms for my daughter, who was an infant at the time.

Glad to discover that it would be me!

Friday, March 12, 2010

Fifty-one, two-and-six, three and almost three, and almost nine!

I never play the lottery (even though I live against the odds). I once heard a comedian say that the lottery was a "tax on people who are bad at math!"

I wasn't failing to count backwards from 100 by sevens. And I'm not having a Hurley/LOST experience.

Is this a brain teaser? (NO! Never tease what's left of your brain! Exercise it and be nice to it!)

What do these numbers mean to me today?
  • Fifty-one months of survival since my craniotomy and cancer diagnosis.
  • Two years and six days since I "graduated" from chemotherapy. (Will they ever call this "remission"?)
  • Tomorrow will mark three years and three months since my first of many stable MRI's.
  • Tomorrow my son will be nine years old. I remember when I wondered anxiously if I would be here for his fifth birthday.

In other words, these numbers mean EVERYTHING to me!

Monday, March 08, 2010

Who against hope believed in hope

I couldn't remember if I had posted this before, but I read this passage again last night and was reminded of how delicious it was:

Romans 4:18-21 (discussing Abraham and the promise that he would be the father of many nations) - "Who against hope believed in hope, that he might become the father of many nations, according to that which was spoken, 'So shall thy seed be.' And being not weak in faith, he considered not his own body...neither yet the deadness of Sara's womb...he staggered not at the promise of God through unbelief; but was strong in faith, giving glory to God; and being fully persuaded that, what he had promised, he was able also to perform."

I especially love the conceps of "against hope believed in hope" and "he considered not his own body." Abraham did not give in to discouragement in a seemingly hopeless situation, because he had his trust in God instead of in the arm of flesh. He remained faithful and obedient, and he hung on to hope.

No matter what adversity we may face, we can "against hope believe in hope" and "consider not" perceived barriers. Our perception is far too limited. As we put our trust in God's way of accomplishing His work, we will find ourselves blessed in unexpected ways.

Saturday, February 27, 2010

Jim was right!

As the eldest sibling in my family, I always wanted to be the one that was right. Cancer changed that.

I remember my first Messiah solo audition shortly after neurosurgery and the beginning of chemotherapy. I knew that, statistically speaking, it looked like my last chance to sing my favorite oratorio, and so I was anxious for the opportunity to land a solo.

At that time my brother Jim scoffed and predicted that four years later, people would see me coming in and say, "Here comes Sister Oakes again, saying this may be her last Messiah!"

I knew that miracles were possible, and I smiled at his optimism. But I also knew that the odds weren't in my favor.

That's why I'm glad the odds aren't in charge. GOD is in charge. And for whatever reason He has seen fit to leave me here with the ability to do many things.

Today Jim's prediction became reality. I have done other Messiah performances since then, mostly at other venues, but this morning was the "four years later" solo audition. The director is a cancer survivor, too, now, so we both rejoiced in the miracles that allowed us both to be here, celebrating the Messiah through music.

This year the program is short, and there is only one aria in the performance. It's my favorite one: "O Thou That Tellest Good Tidings to Zion." There was a room full of women waiting to audition. I don't know if I will land the part, and I won't know for a few more weeks. But coming in for the audition and proving my brother right was a delicious experience!

Friday, February 12, 2010

GOLDEN!

In Texas, we don't often get a foot of snow in one night -- but we did! Another ordinary miracle that closed offices and schools and let us enjoy the day together. Jacob and Emma made a snowman and a snow fort, and after warming up with hot chocolate, engaged in a neighborhood-wide snowball fight. A day to treasure!


Today I am "golden!" FIFTY months of survival since my cancer diagnosis. GBM survivors don't always get to say that -- but I did! Another ordinary miracle that makes days like today even more delicious. This evening my husband and daughter are attending a daddy-daughter Valentine's party/fundraiser, and my son has asked me out on a dinner date to my favorite Italian restaurant. Tomorrow is a Sadie Hawkins dance at church, and I asked my husband to go with me. He said yes -- it's like our first date all over again! Life is good!


As my husband surveyed the splendor of our winter wonderland this morning, he noticed one stubborn, golden leaf dangling from the white-crusted oak tree in our front yard. Considering the Texas weather that has raged about since all the leaves turned golden last fall, this is one leaf that is determined to hang around.





It reminded me of one of my favorite O. Henry stories: "The Last Leaf," which is a tale of Christian charity and the power of the determination to hang in there:

http://http//www.enotes.com/best-o-henry-text/the-last-leaf

I think I should frame this photograph and envision myself as that little golden leaf, hanging on with complete disregard for what might work against me. Of course, in my vision, I'll keep three other "Oakes" hanging there with me!

Sunday, February 07, 2010

Ask and ye shall receive

Matthew 7:7-11:

"Ask, and it shall be given you; seek, and ye shall fine; knock, and it shall be opened unto you:

"For every one that asketh receiveth, and he that seeketh findeth; and to him that knocketh it shall be opened.

"Or what man is there of you, whom if his son ask bread, will he give him a stone? Or if he ask a fish, will he give him a serpent?

"If ye then, being evil, know how to give good gifts unto your children, how much more shall your Father which is in heaven give good things to them that ask him?"

I was pondering this passage today, knowing that some feel disappointed when they don't receive what they asked for. Some question God's love for them (or even His existence) because a prayer seemed to go unanswered. But I happen to know that all prayers are heard, recorded, and answered. I know that every one who asks will indeed receive.

As I pondered the idea of giving good gifts to my children, the remaining fragments of my mind recalled that we were almost out of bread. It's a common situation, because my daughter loves to make her own sandwiches for breakfast and lunch, and she also raids the bread box for snacks. If Emma came to me one evening and asked me for some bread after consuming half a loaf earlier in the day, I certainly would not give her a stone. But I probably wouldn't give her bread, either. I know that there are better things to give her in this situation. Maybe some string cheese. Maybe a piece of fruit. Maybe I'll surprise her with something she's never tried before, and it will become her favorite snack. Maybe it's almost dinnertime, and she should wait a little while so she can enjoy a good meal.

Somehow, some way, she is going to receive something good. She may not necessarily receive the same thing that she asked for, but it won't mean that I don't exist or that I don't love her. What she receives will be on my terms, as a parent who loves her and knows how to provide the best for her.

If I, being evil (or at least mortal and imperfect), know how to give good things to my children, how much more does my perfect Heavenly Father know how to give good things to His children when they ask Him! It may not be exactly what we asked for, which is completely understandable when we realize the limitations of our mortal perspective. What we receive might first require patience. But we will receive good things in response to our petitions. And it will be on His terms, as a parent who loves us and knows (far better than we do) how to provide the best for us.

Tuesday, January 26, 2010

Rock Solid Stable!

That was how the radiologist assessed my condition!

It was a long wait before we knew for certain, because the perfusion report took longer than expected. But I had my prayer cushion supporting me, and all was well!

Monday, January 25, 2010

Tomorrow, tomorrow, I love ya, tomorrow...

It's MRI day
Tomorrow
Bet your bottom dollar
That tomorrow
Will be fun!

Just thinkin' about
Tomorrow
Hope the stuff that once caused
So much sorrow
Will be done!

When they see my display
Of grey
Brain matter,
Hope they lift up their chin,
And grin,
And saaaaaaaay...
(ohhhhhhhh...)

"You'll have many more
'tomorrows'!"
(Still, don't put off life
Until tomorrow --
SEIZE THE DAY!!!)

Tomorrow, tomorrow,
I love ya, tomorrow!
And thank God
For those who pray!!!!

Tuesday, January 12, 2010

So now what do I call this?

...and...FORTY-NINE?

...and...4-1? 4.083?

...and...HIGH-FIVE: THE FIRST MONTH?

Whatever it's called, it's another month of survival under my belt, and something to be grateful for!