Friday, December 24, 2010
Dreaming dreams of tomorrow and present ahead.
The stockings were hung by the chimney with care,
With one stocking empty, it didn’t seem fair.
Together we planned for next morning’s first light,
With children all happy and joyful and bright.
Announcing a trip full of magic and fun,
But now the announcement was for us, minus one.
Somehow we were meant to be a family of three,
For this year’s Christmas, it just had to be.
For the Lord knows what’s best for each of his children,
To reach our potential, if we will just listen.
His plan may be tough, and yes we'll miss mother,
Yet our family still knows that we’ll be together.
When we finish our test, mother with us will be,
And we will no longer be a family of three.
Tuesday, December 21, 2010
Truly nothing is too hard for God. And with His help we can overcome all He ask of us. Krista wrote the following to her 2ofus4now support group on March 15th 2009:
"I really know -- that God made me and loves me, just like he loves you. Just like he loves my family. He knows what we need in order to be all that we want to be. Whether I live or die, all is well. It may not be easy for me or for my family, but all is well. Our loving God is in charge, and if we will just stop trying to grab the steering wheel, he will take us where we need to go."I know this to be true. For some reason things have to be the way they are. Krista finished her test and was called back to our Heavenly Father before we expected. But she was ready. She had been preparing for this for many years and was ready to meet her Savior and receive her eternal reward. I also know that God love me and my family just as He loves you and all of His children. He knows me, knows how I feel. He knows how much I miss Krista and the worry I have about being a good enough father to help Jacob and Emma endure and overcome this trial. But I also know that He is there to comfort me when I'm sad, to strengthen me when I feel weak, and to encircle me with his perfect love when I humbly kneel before him and ask. I have felt his love and I know He lives.
Saturday, December 18, 2010
Tuesday, December 14, 2010
Last night the doorbell rang, I knew what was in store. The Relief Society president asked if it would be okay for them to come caroling to our house to surprise Jacob and Emma with songs, gifts and letters about each carolers' memories of Krista. I quickly gather the kids and went to the door. Upon opening the door I was astonished by the sight. There were friends from our ward, school teachers, PTA associates of Krista's, neighbors and school mates. Our sidewalk and lawn were overflowing with angels that came to sing to us. There must have been at least one hundred people there to show heartfelt love and support for our family. There were many tears of joy as each person came forward to give us gifts, letters, hugs and words of comfort. It wasn't a difficult or miraculous thing each person did that night but added together they made a big impact on our family and brought a peace and love into our home that was needed in this time of loss.
We may never know the impact of the little things we do in life. Smiling at someone that walks by, holding the door for the person behind you, saying kind words or at this time of year sharing a sincere "Merry Christmas". Not only can it bring joy to the hearts of others but it will lift your spirits and instill in you a desire to do more little things for our brothers and sisters.
In Alma 37:6 is says "by small and simple things are great things brought to pass". You may never know the full impact of the little things you do every day. Let's try to make them all good things that together add up to be great.
Saturday, December 11, 2010
"I have fought a good fight, I have finished my course, I have kept the faith"
This is the second time that I have posted on Krista's behalf and it may be the last.
Thursday night we read scriptures with Jacob and Emma, had family prayer and gave the kids a kiss and a hug good night. That was the last memory they would have of their mother. Krista passed away Friday the 10th of December 2010 at 3:15am. She went quickly with minimal pain and suffering. The doctors at the ER did all they could but it was her time go. I was able to hold her hand at the end and with Bishop Moon at my side was able to offer a prayer releasing her from this mortal world to return to the care of our loving Heavenly Father. She has truly fought a good fight and kept the faith until the end. She has been an inspiration and comfort to many. She has mourned with those that mourn, comforted those that stood in need of comfort and stood as a witness of God at all times and in all things, and in all places (Mosiah 18:9). All this she did while she stood in need of comfort herself. She was a remarkable woman and I am honored to be sealed to her as her husband for all time and eternity. I know she will be missed by many.
Memorial services for Krista will be held on Thursday December 16th at 11:00am at the LDS Church at 2401 Legacy Dr, Plano, TX 75025. A public viewing will precede the services at the same location from 9:30am till 10:30am. All are welcome to both the viewing and the services.
I would like to thank all those who showed support and love and offered many hours of service to Krista and our family. We couldn't have made it this long without your help. I would like to thank the doctors that treated Krista over the years, especially Dr. Karen Fink and her wonderful staff. They have given us over 4 years that we didn't expect to have together. They have been the best years that we have had. And I would also like to thank the endless procession of "Angels" - as Krista would call them - who have lifted our burdens and allowed us to fully enjoy the last 5 years. We love you all.
Monday, November 22, 2010
This was what I said to friends and family in an email that ultimately became the beginning of this blog. It was November 21, 2005. (Happy Blog-a-versary!)
I haven't told the rest of the story about that day, but I remember it well. It was a Monday, and we were awaiting word from my neurologist about the MRI and EEG studies that had been done on Friday. He had already called on Saturday to tell me to start taking anti-seizure medication, but had no other details. We had an appointment for Tuesday morning to go over these test results.
Then on Monday morning he called me with an urgent request to meet that day. Pick a time, and he would work me in. Other planned appointments and diagnostic tests had been cancelled. This was a highly ominous conversation, and I was obviously concerned.
Two conversations followed after I hung up. One was a phone call to my husband at work, so that he could arrange to accompany me. The other was back at my bedside, on my knees, to pray.
What occurred during my prayer was highly personal and sacred and comforting. I believe in the Comforter -- the Holy Ghost -- and knew that he was communicating with me in direct and immediate response to my prayer. Personal scripture with direct relevance to my situation was silently but clearly spoken to my mind. Specific words from long ago that had previously seemed unimportant and would normally go unnoticed, were recalled to my mind along with the impression that they were meant for this situation. And then there was a feeling of peace that cannot be adequately described. I rose from my knees knowing that I was under the watchful care of a loving Heavenly Father, and that whatever this was, I would be able to handle it.
Admittedly, I was also hopelessly naiive. The neurologist was very kind as he described the MRI results and the neurosurgery that would result. I knew that my grandfather had died from a brain tumor many years before, but this seemed different. I took solace in knowing that this was likely a primary tumor instead of a metastatic tumor, and that it was in an operable location. I had no clue that primary brain tumors are quite often malignant tumors, or that anything life-threatening was going on (other than the risks of surgery). I thought brain tumors were only a big deal when they were not operable. I was healthy and could surely endure neurosurgery. It honestly seemed like my biggest concerns were whether to continue with my upcoming hair appointment, and how to manage the logistics of neurosurgery so close to Christmas.
After coming home and digesting this news I started telling my parents. I remember both my mother and my father being very concerned, and weeping at the news. I figured they were overreacting because of my grandfather's experience. But it was so long ago! And this is different! I talked about it as matter-of-factly as if I had a cavity that needed to be filled. ("Hey, Dad -- wanna see the MRI film? Here it is right here!") I did my best to reassure them that I was going to be fine. You can see what I wrote at that time, if you go to my very first posts on this blog.
Obviously as the story began to unfold, my naivety gave way to reality. The seriousness of the situation began to sink in, and things beyond our worst fears were starting to materialize. It became overwhelming. However, once the pillars of ignorance and innocence fell, I did not collapse. The experience I had in my room prior to meeting the neurologist was a strengthening one that provided an important support column. It was the remembrance of this very personal answer to prayer, the words that entered my mind, and the unmistakable feeling of peace that accompanied it, that became the real source of my strength and optimism. Other similar experiences followed when needed.
I was taught long ago that there are counterfeits for everything except the peace that is the hallmark sign of the Holy Ghost. Within the presence of that peace it is impossible for fear and doubt to abide. There are many good feelings and emotions, and I've experienced those, too. Feelings of love and relief and joy and hope and wonder, and so on. But when there is spirit-to-spirit communication with the Lord through the Holy Ghost, it is unmistakably and undeniably set apart from these other feelings, and it becomes the only reliable source of confirmed truth. My greatest desire is to live long enough to help my children learn to access and recognize this for themselves.
What I came to know on that fateful day was and is still true, and it has sustained me throughout five years that began with "It's okay -- probably/hopefully" and remains standing at "It's okay -- definitely/surely--no matter what."
Sunday, November 14, 2010
In fact, we're already five years from the time of my first "seize the day" episode. November 13, 2005, was the Sunday morning when I had a seizure while getting Emma dressed for church. We had no idea what had happened. Three days later, on the 16th, I had a series of episodes that led to a wrong diagnosis by an over-confident ER physician. Finally, on November 21, 2005, we saw an MRI scan with some kind of abnormality that looked like a tumor. We had no idea what it was until surgery on December 12 revealed that it was a malignant tumor. I knew then that I had cancer. And on December 14 our worst fears were realized when the cancer ended up being a grade IV glioblastoma. Statistically speaking, five year survival was considered a miracle at that time.
So we're counting down to December 12, when we can celebrate the completion of my "high-five" year of survival.
We're also counting down what I call the "blast-off". As in, my final radiation blast is tomorrow morning. And hopefully we'll get all that blasted glioblastoma blasted off into oblivion!
Sunday, November 07, 2010
A friend of mine lost her husband a few years ago. (Actually, I shouldn't say she lost him, because she knows very well where he is, which is a very comforting thing.) Anyway, as we talked in the days following his passing, she commented that when a person is born into this earth there is great anticipation and joy. And she felt certain that when a person is due to return home from whence we came, there is probably similar anticipation and joy for those who have preceded him and long to greet him.
During her pregnancy my sister-in-law had to deal with Braxton Hicks (false labor) contractions for several months, which thankfully did not result in premature birth or any complications. (Just maybe a great opportunity to play the guilt card later!) Caden was born healthy and beautiful and perfect...and at the right time for his mission in life. It was so nice to see him, fresh from heaven and ready to take on the world with a loving family surrounding him.
Meanwhile, I'm hoping to emulate his example of crossing the veil at just the right time...and not a moment too soon!
I am home, stretching my muscles right now after Saturday's Brain Tumor Walk. It was a great event, raising over $1 Million for the National Brain Tumor Society, which puts a lot of money directly into research.
Our "High Five" team ended up with only three official members, because our daughter was too young to register. However, we still had many generous donors, and I appreciate each one!
We had a great time. Many volunteers donated food, drinks, and bounce houses to make it a fun event. The kids had a great time, and even had a chance to meet other children affected by brain cancer. Some of the children were feisty survivors themselves, and some had parents who were survivors. One of the highest fundraising teams had just lost their captain to a brain tumor the week before, and there were poignant "We Miss You, Mom" signs being carried by her children. One of the other teams donated part of their money to her team. It was a day filled with courage and support and lots of positive things being done about an otherwise awful situation. I always believe that God is so good, He can make good out of anything, and this was one example of how that happens -- especially when people are willing to help.
Five years ago I was training for a 5K run when I started having seizures. This year I thought I would train to run this 5K event when I ended up with a spine tumor. I decided to stop telling myself to train for 5K events...and I stopped preparing to run this one. I thought I would just sneak up on myself and see how much of it I could run. I ended up learning that I need to re-learn how to run! I think with everything that had been going on with my back and my legs and the foot drop thing...and the lack of running for so long...I just need to retrain some of my muscles. It just felt kind of weird to run, like I needed to remember how. I was stable enough -- didn't fall into the Trinity River that ran along the course -- but I did take it in walking and running intervals just to be safe. I would pick a landmark, like a tree or a pole and focus on running toward that. And then I would walk to the next item and try again. It worked out well, and I was happy with my time -- and the fact that I was doing this when last month I had foot drop and couldn't walk on my toes!
We are approaching the home stretch of the treatment game. Six more radiation sessions. Five more weekly Topotecan injections through the "oh my -- a reservoir." A few more rounds of Avastin. About a week left of nightly Temodar. Things are still very tolerable. So far bone marrow has been holding strong, which has kept me in the game. So far, CSF remains clear, with protein levels decreasing (a hopeful sign). Pain is also decreasing, which is another hopeful sign.
For some reason I have managed to lose some weight and spend a lot of time happily pulling clothes out of storage that have been mocking me for the past five years! (That's been my favorite side effect so far!) I still have my moments when I need a serious nap during the day -- and I remember from my first radiation adventure that the fatigue wall really starts to hit toward the end -- but still, there really isn't anything to complain about, all things considered. We'll get through this home stretch, and then we have a pause before we know the actual score. The Mets didn't have a great season on the field, and I'm praying that they will continue to lose here!
Sunday, October 31, 2010
Charlie also introduced me to Coconut M&M candy, which may actually cure me. It's good stuff -- like an Almond Joy in a candy shell!
I just can't say goodbye to Charlie without thinking of one of my favorite Michael McLean songs, called "One Heart in the Right Place":
And Jared and I decided to go as one of the great movie couples of all time: Napoleon Dynamite and Deb. (Deb's side ponytail combed nicely over the Ommaya reservoir!)
It was fun -- to stay in character, we went to Sonic afterwards and ordered tots...
Friday was one of those spontaneous precious moment days. My husband ended up being able to take the day off, and with the kids in school we had an all-day date. I relieved my angel driver for the day with full honors and blessings, and Jared drove me down to the medical center for my Friday zip-zap. He was able to meet my friends Terry and Janice (pray for them as they go through their radiation treatments) and some of the radiation technicians.
The rest of the day was filled with other tasks, and we were able to quickly turn a lot of "to-do's" into a lot of "Ta-Da's!" and even squeeze in a quiet lunch together before school got out.
It's kind of funny; other than lunch, the list of activities is pretty boring in regular retrospect. However, in my very non-regular retrospect, I think this was one of the most romantic days we've spent together. It reminds me of our dating years, when we were best friends and getting things ready for his mission and my schooling.
This is one of the gifts of the cancer experience. Before it, I wonder how many fantastic Fridays we've breezed through without stopping to notice and give thanks.
Thursday, October 21, 2010
I remembered "fox," "popcorn," and "tree." I spelled WORLD backwards and forwards, but didn't get asked to count backward from 100 by sevens. (I just naturally start doing that when I see Vanessa coming my way!)
Labs look great: I still have bone marrow, chemistry looks good, and so far no tumor cells are showing up in the CSF. I'm still in the game!
I actually had reflexes in my legs, which is something kind of new. Even when I was a kid I wondered why the doctor always banged on my knee with a hammer, because I never had a kick reflex. Maybe this is a new skill, like when I became better at sightreading after brain surgery!
I managed to lose my foot drop and aced the catwalk portion of the exam, walking straight lines on my heels and on my toes and proving once again that I am (and always have been) stone sober. I'm hoping this is a signal that the underlying cause of nerve problems is being defeated quickly.
We'll know more soon. I'll be a five-year cancer survivor by the time we know how this plan of attack has been working.
But what an interesting date to look forward to. I go in for a brain/spine MRI on December 14, 2010, which is the fifth anniversary of the day my neurosurgeon confirmed the word that changed my life: "glioblastoma." I meet with Dr. Fink for a verdict the next morning, which is the 5th anniversary of my Grade IV Glioblastoma blog post. (That post has the most comments of any on my blog.)
Sunday, October 17, 2010
I remember waking up and feeling very rested and comfortable. As always, I'm just happy to wake up, period. But I realized that I had rested well, and that I was in a comfortable bed in a comfortable bedroom in my home. My husband was with me, and I was madly in love with him. My children were upstairs sleeping, and I was so happy to know that they were part of our family. Together, our family knew and relied upon our Savior, Jesus Christ, and were grateful for the knowledge of Him.
I rolled out of bed to say my prayers, and I noticed how comfortable it felt to kneel without screaming pain in my back and legs. The gratitude list began easily and went long.
Friday had an unusual schedule. Two parent-teacher conferences. One radiation treatment downtown. School holiday for the kids, followed by a Primary activity in the afternoon. And ward temple night with my husband. We decided to try and squeeze in a quick trip to the state fair, just to make it a fun family day. It was an ambitious but fun venture, and we were blanketed with tender mercies to make it an especially memorable and happy day.
The parent-teacher conferences ended up happening back-to-back instead of hours apart, making it possible for both to be completed before I had to run to my radiation appointment. Both teachers had excellent reports; both kids are doing very well, despite the new chaos in our family.
Traffic was uncharacteristically easy, and I emerged early from radiation just as my husband and kids pulled up to take me to the state fairgrounds a few miles away. We arrived just before the gigantic Texas Star ferris wheel opened for the day, and were the first ones aboard. I'm not much of a ferris wheel person, but this one was fun -- I felt as though we were on top of the world for a brief moment.
We attend the state fair once a year, and have our own little family list of favorite "must-do" things. This time they all fell perfectly into line, and with minimal crowds and beautiful weather we just plain had fun. Em was able to do her butterfly ballerina dance, and Jake was able to be the lion tamer in the Backyard Circus. We indulged my husband's favorite car show exhibits, we did the DAR Museum and the Little Hands on the Farm and sampled the disgusting but cool fried offerings that make corn dogs seem passe.
This year Jared tried both fried Frito Pie and fried pizza. (Jake helped him with the latter.) The kids and I had fried PBJ & banana sandwich along with some grilled corn and a caramel apple. Thanks to the local dairy sponsors, we had plenty of milk to drink.
Normally excursions like this involve at one grumpy/whiny/overtired episode before the day is through. With so much going on, it can get exhausting and overwhelming for kids and adults alike. But it wasn't like that this time. It was just a really happy day! I kept sitting back and hoping I was imprinting these memories into (what's left of) my mind, and hoping even more so that they were being imprinted into the memories of my family members. I want this to be remembered as a happy time for all of us, being able to spend time together just enjoying each other.
We left for home having done all that we set out to do, and having plenty of time to prepare for the events ahead of us. Traffic was easy on us again, and I continued to marvel at what a blessed, easy day this was. And on the horizon was a chance to go to the temple that evening. It just couldn't get better than this!
For a fleeting moment, the thought crossed my mind that it was such a good day -- if it had been my last day on earth I couldn't have imagined a better one. (Unless, of course, we had each been about fifty years older that day!)
As my husband and I left for the temple, it occurred to me that I had not taken any anti-nausea medication that evening. It was not something I would typically do, except that between the Topotecan and the radiation hitting so close to my stomach I am more prone to nausea. I am normally premedicated for nausea when I receive Topotecan, but this was the following day, when that would typically wear off. Since I had not yet had a major nausea problem, I figured I would probably be okay.
I wasn't. I didn't figure in the "fair factor." I ended up having to excuse myself during our temple session to avoid catastrophe. It was disappointing to feel so physically awful, and to miss this opportunity that evening. All was fine. Temple workers were swift and kind in caring for me. I'm sure my name was added to the prayer roll by many of the others in attendance that day!
The rest of the evening was rocky as I fought to keep down that evening's chemotherapy, even after taking my anti-nausea medication. It was a long night. But I made it! It was still a most amazing, wonderful day. My temporary physical setback was no need for alarm. God hadn't stopped pouring tender mercies on me that day. I had merely enjoyed my amazing, wonderful day so much, I overdid it!
Kneeling by my bed that evening I had an even longer list of things to be grateful for that day. (Including the fact that a fried peanut butter/jelly/banana sandwich is out of reach for at least one more year!)
Tuesday, October 12, 2010
Sunday, October 10, 2010
Monday through Friday was radation and oral Temodar chemotherapy. My favorite part was riding down to the medical center with friends who gave me limo service. We had lots of fun visits and chats together. It's a lousy circumstance for getting to know awesome people better.
The radiation routine is a quick one. I walk in, scan a card, and gown up. They let me keep a gown for the duration of my treatments, so I can "pre-gown" at home to make sure the backyard is completely covered, and then just remove clothes when I get there. I sit down and have a brief chat with Janice and Jean, other survivors on the same schedule, until our turns are called. Then it's about ten minutes in the zapper and out to change and move on.
I'm not sure what the big deal was with the tattoos. They are smaller than freckles. In fact, the radiation technicians mark all over the tattoos on my abdomen with marker.
The session is so short, I usually hear the same reggae song in the background and watch the machine rotate around me a few times, and then I'm done. For my visual on Friday, I began to picture a skylight opening up in my spine to reveal a cringing tumor (gurgling with chemical poisoning) as it begins to shriek at the incoming beams. I had to keep from giggling so I could hold still. After a few days I noticed a slight sunburned feeling on my backside. I wonder if I should put one of those tanning booth stickers on me to check my progress.
The nightly Temodar thing is familiar and easy. Just no late-night snacking, which has paid off on the scale already -- despite getting lots of steroids in the mornings.
I started Avastin this week, too. It is also familiar and very tolerable. An IV infusion every other Thursday. And maybe a Benadryl at night, because once in a while I might get one hive from it. I'm just glad that Avastin is still available. It worked wonders on me before, but its FDA approval is in jeopardy of being pulled, simply because of its cost. (What is the value of five years of my life? Can I decide, or is that now up to a death panel?)
Topotecan is the fourth blow. It goes in through my Ommaya reservoir ("Oh, my -- a reservoir!"). Only Dr Fink or her nurse practitioner may do this infusion, because it is a highly specialized process. This has the longest list of undesirable side effects, including nausea and arachnitis. They pre-medicate me with more steroids and anti-nausea meds before giving it to me. I get this on Mondays and Thursdays for six sessions.
(Arachnitis, by the way, is kind of a chemical meningitis. It has nothing to do with spiders.)
With the exception of Temodar, I have the weekend off before heading on my daily trek to the medical center. I'm looking at the list of my chauffeurs for this week and eagerly anticipating our visits. I look forward to seeing Janice and Jean again. (We're all praying for each other.)
On Mondays I meet with my radiation oncologist for a review and also for blood tests to see if I still have bone marrow producing enough red and white blood cells and platelets to continue treatment.
We're one week down; not sure yet how many more to go. The worst part has been fatigue, as though I finally realized that a major battle is being waged. I'm managing pain very well, and I'm also getting some strength back in my droppy foot. (Just don't tell the kids, because they are in charge of keeping the house free from stuff Mom can trip on!)
Someone asked me if I'm hanging in there okay. I had to reply that I'm not hanging at all -- I can't hang, because I'm being so well supported!
Wednesday, October 06, 2010
We all get something. We get life, and we get mortal experiences that are designed to help us reach our highest potential as children of a loving God. As was mentioned in our recent General Conference by Elder D. Todd Christofferson:
Mortal experiences are sometimes quite awesome (chocolate, roses, the smell of my husband's neck, and hugs from my kids -- to name a few). And some are quite difficult, because mortality is messy. The good news is that the difficult parts are intended to be temporary (like my daughter's first wiggly baby tooth). But the gains that we make during these experiences are intended to last forever. God has consecrated every affliction to my gain, and these gains are everlasting treasures that far outweigh their price. I wouldn't dare throw a fit!
Instead, I feel both obligated and privileged to look for ways to consecrate these gains back to God for a good purpose.
Tuesday, October 05, 2010
Two days of radiation are behind me, and they were a blast for the 'blast! After yesterday's first zapping, I stopped by Dr. Fink's office and got my head tapped. It's a lot more comfortable than a spinal tap, getting fluid drained out of the Ommaya Reservoir ("Oh, my! A reservoir!"). Just checking more spots to see if tumor cells are floating around in there, as the previous taps have come up negative. Hopefully this means the mass is just stuck to the wall of the spine and not spilling bad stuff anywhere else. It's just paralyzed with fear and waiting to be defeated.
I had a nostalgic moment last night, starting back on the Temodar routine. Eat a light dinner, wait 90 minutes, take anti-nausea pills and seizure meds, wait another 30 minutes, take Temodar, and sit up for another 30 minutes. No late-night snacking. I magically woke up two pounds lighter, even though I'm on steroids again!
I'm also lighter in my step -- literally. I have foot drop. My black-belted, clog-dancing, neuro-test-acing right foot is now unable to stand on tiptoe, and I walk a little funny now. I stay away from stairs, and I have to avoid tripping. (So the kids are charged with clearing all pathways in the house!) It's not unusual in people with sciatic problems, but my amazing neuromuscular strength was always a reassuring sign until now. Even so -- there are many other things on the complications buffet that I am happy to pass over for this one.
On Thursday, following radiation, I will be staying at the medical center for a double delight: Topotecan in the head, and Avastin in the arm. It will take most of the day, and will add to the hustle and bustle of downtown trips and children's schedules and all of the good stuff of life.
I am so grateful to be surrounded by family and church friends and angels from all over the place, who are eagerly at hand to meet every need. Between the logistical help (rides, meals, childcare, errands, etc.) and the spiritual support of prayers and fasting, I am definitely feeling the love. This helps me square my shoulders, straighten (what's left of) my spine, and move forward (foot-drop and all) with my life.
Sunday, October 03, 2010
With a pain in my back and a lump on my head.
The Temodar pills once more lined up with care
With other drugs making it easy to bear.
Skilled doctors have made an aggressive new plan.
Temodar, Avastin, Topotecan
In mouth, in my arm, and even through my head
Determined to make all the cancer cells dead.
Insurance and IV poles will be prepared
In hopes that Avastin's fate will soon be spared.
If five years of life doesn't seem worth the cost,
Will FDA's ban mean that this hope is lost?
The spine zapper's ready for me; I'm tattooed,
And surrounded by love and prayers lifting my mood.
I'm forgetting about all the parts in harm's way,
Praying that only tumor cells get every ray.
From the top of my head to the base of my spine,
So far things have gone from bad to worse...to fine.
The prayers of the faithful make me quite assured
That any miracles meant for me have been secured.
Friday, October 01, 2010
Thursday, September 30, 2010
As always, Dr. Tompkins did an expert job installing the Ommaya reservoir. But he admitted that he is a lousy barber -- and he's right! The worst side effect of the surgery so far is a fist-sized shaved spot on top of my head above my right eyebrow, where hair used to start. But I'll take that. After all, the Halloween costume opportunities are endless!
Sunday, September 26, 2010
It's less than 24 hours away. 3:30 on Monday, to be exact. I check in at 1:30, and after surgery I stay in the ICU for at least 24 hours. Infection is a high risk complication, especially when cerebral spinal fluid is involved, so I will be getting antibiotics for 24 hours.
The wagons have circled on my behalf. My husband's employer is wonderfully supportive. (Really -- call your local Mary Kay consultant and buy LOTS of stuff!!!) Family members and church members are already lined up for meals, child care/entertainment, and anything else I can ask for. We have a new captain of the angels, and her primary burden is sorting through all of the duplicate volunteers. Prayers and fasting are also in abundance.
(Speaking of fasting, despite the 3:30pm schedule, I still have directions of NPO after midnight. So I'm there with you.)
Temodar and radiation will start the following Monday. I went in last Friday for a flu shot, a C-T scan, and another MRI. I also got tatooed with several tiny black freckles, and I will go in again this Friday for "final marking" (whatever that means).
My husband and son got their flu shots, too. My daughter is looking forward to hers. We spent Saturday scouring the bathrooms and placing hand sanitizers at every entry in our house. The kids have been retrained in laundry and dishwashing skills. We are doing all we can to prevent injuries or infections. I'll be the princess in the bubble.
For health and safety reasons, I was asked about the possibility of being released from my calling as a cub scout leader. There are legitimate concerns about whether this would be advisable for the time being, but I am finally hitting my stride in this assignment and am really enjoying it. However, sometimes when we get really good at something, the calling is released, and we look forward to another opportunity to serve in the church. I said that if the bishopric prayed about it, I would do whatever they thought was best.
The most important calling to me is that of mother, which is a calling I waited many anxious years for. My role was not to bring my children into the world -- that was the job of their angel birthmothers. (I couldn't possibly make them this cute, and I'm glad I didn't pass any DNA on to them!) My role is to mother them and nurture them and prepare them for all that is needful in this world. And they are at a very enjoyable age right now. We have had some precious teaching moments together. In fact, feel that I am hitting my stride. But hopefully this will not signal the release of my calling to raise them. This time I am praying about it, and I know that the Lord will do whatever He thinks is best. These are His children, too, and he will provide every needful thing for them, just as He has for me. (I just hope that I am one of those needful things!)
So off I go tomorrow, hungry but cushioned and blanketed with prayers and faith of so many. There is truly enough faith present to work miracles, so I am secure in knowing that the outcome of this process will be the right outcome.
Wednesday, September 22, 2010
"Mets" is medical shorthand for metastasis, which was the unanimous consensus during this morning's tumor board meeting. I have glioblastoma mets in my spine.
Dr. Fink asked me to come in afterward -- with my husband -- which sounded ominous at first, but it served a practical purpose. We went over the plan of attack, and there were a lot of details. (I was grateful that this wasn't the "get your life in order" talk.)
Because there is no defined scope of tumor cells beyond the visible mass, cyber-knife was ruled out for now. So was radiating the entire spine and cranium, because it would have a high risk of destroying bone marrow to the point where chemotherapy would be impossible.
I start Temodar chemotherapy on Monday. This is the oral stuff that began my treatment back in 2006. Tomorrow I meet with my neurosurgeon to arrange for implantation of an Ommaya port in my head sometime early next week. The Ommaya port goes in my head to facilitate repeated intrathecal injections of Topotecan chemotherapy.
I also start radiation treatments soon. I met the radiation oncologist today, who participated on the tumor board, and who is designing a plan for me. I go in on Friday for C-T scanning and marking* in preparation for 27 sessions that will probably start next week.
*I will have a low back tattoo. You will never see it.
I start taking steroids tonight, which means my next book will finally get finished. (Another answered prayer!) I'll be hyper and hungry, but it might provide some pain relief as I go through this process.
This is not a common situation, so we have no idea how (or if) this will work. But it's a plan, and it was clear that the doctors were guided, as we'd hoped and prayed they would be.
The Mets will not win this season. Even if we fail to destroy them, they cannot destroy anything but my body, which was intended to die someday anyway, followed by a resurrection. They can't destroy ME -- in fact, I think they are making ME stronger.
Monday, September 20, 2010
Not much, compared to what was on my mind when this blog started nearly five years ago. Ho-hum, so the brain has been clear for more than three years.
That's a very good thing, but now all the attention has drifted downward into my lower spine. So what do I call this blog now?
Sittin' on a Scream?
Getting to the Bottom of Cancer?
Heads or Tails?
Let the brainstorming (yes--pun intended) begin!
Dr. Fink called me on Saturday, not wanting to wait until this Thursday to meet with my neurosurgeon. She knew a good neurosurgeon and was arranging for him to meet with me today.
I met with the neurosurgeon today, and he showed me in no uncertain terms that there is a tumor on the spine; one that is perfusing and lighting up on the MRI. (It looks like an ugly caterpillar woven among the nerves.) He also saw that the resection cavity in my brain included the ventricle that made for easy access for GBM to escape out of my brain and down into the spine.
He will meet with Dr. Fink at a tumor board meeting on Wednesday morning, to discuss next steps: whether to do an open biopsy to get more information about the cells, or whether to proceed imediately into cyber knife and possibly chemotherapy. Cyber knife therapy would be delayed if they did an open biopsy, so I'm hoping that won't happen. Now the suspense is not what I have, but how we will proceed to treat what I have.
Although the news was shocking and very disappointing, I felt an amazing sense of calm, and a feeling that this was going in the right direction. I continue to pray that the doctors will be inspired to know what to do for me, and I continue to be buoyed by the prayers of many who continue their faithful vigil on my behalf.
The neurosurgeon didn't discuss prognosis, and I'm glad about that. I decided to be the Mary Kay bumblebee. Mary Kay loved the symbol of the bumblebee, because bumblebees are not aerodynamically built to be able to fly. However, because no one told the bumblebee, it still flies. Maybe if no one tells me that I can't live more than a few more months, then maybe I'll just still keep on living.
Friday, September 17, 2010
Spinal tap did not reveal tumor cells, but did reveal high protein levels, which could indicate either blood or tumor. It is possible that there are tumor cells sticking to the wall of the spine instead of floating in the spinal fluid. We just don't know yet, but it seems that we are ruling out other possibilities, leaving the scale tipping in the direction of glioblastoma in the spine.
I meet next Thursday with my neurosurgeon to discuss surgery in order to get more information. "We need a piece of this," Dr. Fink said, as she reviewed the images with me.
And then it seemed like deja vu: mystery symptoms and a series of tests before we finally land on something that sends me to the neurosurgeon. I can still remember his somber face nearly five years ago, as he told me that I had glioblastoma in my brain.
There may still be hope for an alternate outcome. We have to keep waiting and praying and remembering that the Lord knows what is best for me and for my family. We can't just assume that we know for ourselves. I can only pray that His will be done, and trust in it completely.
Wednesday, September 15, 2010
(By the way, she looked at the different scans and said the discrepancy was due to the fact that the "grossly unremarkable" scan did not provide a complete view.)
If I have tumor cells in my spine, she has a game plan: a weekly chemotherapy treatment that would be delivered through a port in my head. She didn't discuss prognosis, and I didn't ask. (It's too creepy to discuss, and it's not her call, anyway.)
I left for a follow-up with my ear surgeon while she met with her radiologist. I silently prayed that she and the radiologist would be guided to understand this situation. When I came back for the spinal tap, she said that the radiologist offered another plausible interpretation: a blood vessel malformation causing bleeding in the spine. He recommended an MRA -- magnetic resonance/angiography -- which is a two-hour trip through the tube to look at things a little differently. That will happen on Friday. We should hopefully receive the spinal tap results on Friday as well.
Just like it was with my first MRI, my first spinal tap was nowhere near as bad as I expected it to be. As Dr. Fink collected the spinal fluid, she observed that it was clear and yellowish, and both made her happy. Only lab results will tell us what these cells are, but there is a possibility that there could be blood cells in there. This would also explain why ibuprofen has been ineffective in relieving pain. (It was probably making it worse.)
"I choose to be optomistic," was Dr. Fink's comment. (Not only was that blog-worthy, but it's a choice we can make in any circumstance.)
If I'm lucky enough to confirm this new possibility, the answer is a surgical correction. Never thought I'd be praying to have vascular surgery near my spinal cord, but it certainly beats having cancer there.
This experience has tested my body and my patience, along with the patience of my family (because I'm just so darn cute and lovable, and they want me to be okay). This experience may have tried to test my faith, but if it did, I didn't notice. I know that this process is in God's hands, and I trust that whatever comes of this will be right for His plan for me and for my family. I know that our needs will be met, regardless of what we must bear.
I still feel the strength that comes from so many prayers on my behalf. The Spirit provides a constant reminder of God's love, and so does the generous outpouring of care and concern from family and friends.
Last night my dad and my brothers came over, and together with my husband they laid their hands on me to give me a priesthood blessing. I am so grateful to have faithful priesthood holders in my family, who are close at hand and willing to help me in any way that is needed.
We remain in suspense until Friday's test results. Meanwhile, there is great peace in knowing that this situation is in the capable hands of a good doctor, and in the loving hands of my Heavenly Father, and supported by the praying hands of many good people who love.
Monday, September 13, 2010
I carried two phones around with me today, waiting for news. I even made the mistake of Googling GBM in the spine, and freaking myself out with the very poor prognosis for that situation. I buried myself in work and even a little bit of family history searching to keep me from going nuts.
Finally, when I was in a phone meeting with the FDA this afternoon, I was interrupted by a call from my neuro-oncologist's office. Dr. Fink wants to meet with me in the morning, and I should bring the films from this latest MRI.
When my heart started beating again it seemed as though my orthopedic surgeon had referred me back to Dr. Fink after getting the MRI results, and she was merely wanting to understand what was going on. It sounded reassuring rather than panicked.
I called the orthopedic surgeon's office to arrange to pick up the MRI films, and I also asked why I was being referred to Dr. Fink about this. The voice on the other end said she would call him and ask. A while later he called and apologized profusely for not getting to me before Dr. Fink's office did. (It was bad form, indeed.)
He said that the radiologist is still "highly suspicious" of GBM recurrence in the spine. He said there was a large mass in the sacral area. Since neither of them have expertise in GBM, they want Dr. Fink to get involved.
When I picked up the films at his office, I also picked up a copy of the radiology report for the MRI study that was done on my pelvis and sacrum a week prior to this latest nightmare. That report said that the sacrum and lumbar spine were "grossly unremarkable." ("Totally normal" isn't medically geeky enough, but that's what it meant.) It seems quite strange that I could go from "grossly unremarkable" to "large mass" in a matter of days. So I feel very reassured about putting all of this in front of Dr. Fink to see what she thinks we should do about this. I'm hoping that our visit will result in some answers instead of more questions.
I also feel reassured about putting all of this into the Lord's hands and letting Him do what should be done about this. I trust that all is ultimately well, regardless of what is happening right now.
I promise I'm not doing this for blog ratings. But stay tuned!
Sunday, September 12, 2010
Today is the 12th, which means another month of survival is behind me (hopefully with many more ahead)! Three more to go until I complete my HIGH FIVE year!
Friday, September 10, 2010
My daughter's kindergarten class has been doing the "head, shoulders, knees and toes" song this week, and she likes to come home and show it off to us.
The song was going through (what's left of) my mind during the three-hour spontaneous MRI today. Despite being "totally booked," the imaging center spoke with my doctor and managed to squeeze me in immediately for a marathon set of scans: brain, neck, upper spine, and lower spine. (So I was singing, "Head, neck, upper back, lower back")
At first I protested the brain scan, referring back to my August scan, which was good enough to earn me a pass until February. I explained that without a perfusion study and prior history, they may be confused by all the mess they will see in my head (like my resection cavity, fried mastoid bone, and a whole lot of scar tissue). The best I could do was give them my neuro-oncologist's phone number in case they saw anything that freaked them out.
This scenario gave me hope that perhaps I was merely dealing with a hyper radiologist who only noticed my glioblastoma history when he was writing his report after Wednesday's MRI, and who wanted to err on the side of caution when he couldn't tell the difference between a tumor and a transitional vertebrae.
(If that's not the case, he may have saved my life.)
So off into the tube I went, carrying thoughts of prayers being offered on my behalf (thank you!) and reliving precious memories with my family, to help take (what's left of) my mind off the pain as I lay flat on my back for three hours.
And between studies, as they would pull me out of tube to readjust frames or inject contrast media, I would always re-enter the tube with gratitude that I fit all the way in there quite easily!
I have no idea what this will reveal. But I remember what I told my son as he accompanied me for my MRI in August: "We will either learn that everything looks great--and that's happened a lot lately--or we will learn that we don't have enough information and need to do more testing, or we will learn that there is something new to take care of -- and it's good to know if we need to take care of something. "
Until we know, I feel like a teenage girl on a Friday night, sitting by the phone and hoping it will ring soon.
However, I know that this situation is in the loving hands of my loving Heavenly Father, and I trust Him with everything. I only pray that His will be done, and that I will know what to do. In return, I have peace in knowing that all will ultimately be well, even if this latest development gets ugly.
I still shed a tear or two this morning, as this is a time for emotions to rise to the surface. But these were not tears of frustration or anger or fear. Just a wistful feeling for my family, who must endure this with me. And sentiment about having to say goodbye to karate and clog dancing and bike riding and running a 5K...at least for now. Hopefully not for long.
My prayers to avoid complacency have definitely been answered!
Wednesday, September 08, 2010
The answer to my prayer came in the form of unexplained low back pain that got increasingly worse. I haven't slept much in the last several weeks, because of the pain. And yes, I have a great neurostimulator and a Sleep Number bed and plenty of Advil and I do a lot of walking. I can't decide what was worse -- dealing with the pain and sleepless nights, or wondering what could possibly have caused this to happen.
My gynecologist and gastroenterologist were each able to rule out anything that would land in their turf. The gastroenterologist ordered an MRI of my pelvis and sacrum and suggested that I take these to my orthopedic surgeon.
The orthopedic surgeon glanced at the radiologist's report but did not look at the MRI images or seem to have interest in them. He immediately diagnosed sciatica after a brief physical exam, and prescribed a corticosteroid, with plans to explore further if the prescription didn't help.
After I picked up the prescription and reviewed the accompanying information, I noticed many warnings about use in patients taking seizure medication. So I called the orthopedic surgeon's office, and they decided that I shouldn't take it. Instead, the doctor decided to order an MRI of the lumbar section of my spine. I had that done today.
Yes, two MRI's in one week, and both had me going in the tube feet first this time! My head stayed outside the tube, which was kind of a weird new experience.
I'm not sure what he is looking for, but two things came to (what's left of) my mind. One was a reminder that I was diagnosed about twenty years ago with a transitional vertebrae that would probably cause a problem with my back in about twenty years. The other was a reminder that brain tumors generally stay within the brain...but can also spread into other parts of the central nervous system (like the spine). I think they are both plausible causes of sciatica pain, although the former is (hopefully) more likely than the latter. Either way, I'm hoping the MRI will provide the answer and a road map to relief.
Unfortunately, I was told that my orthopedic surgeon only reads incoming radiologist reports on Tuesdays and Fridays, so I have a while to stand around (sitting is too painful) and wait for the verdict. Whatever it is, and wherever we go from here, I only pray will reflect God's will. I can always trust in that. If it's an easily correctable problem, that would be another reason to celebrate. If it's a major problem, then we found something that needs major action, and I am ready to jump into that...feet first.
Wednesday, August 18, 2010
As part of my HIGH FIVE year, I am forming a team to raise at least $5,555 for the National Brain Tumor Society. They have done good things for me and for my doctor, and we are both setting up teams this year!
My team's name is "Krista's High Five," and we are looking for team members. If you can be in Ft. Worth on November 6, we'd love to have you there with us. If you'd rather support us from afar (or from a couch) you can be a "virtual" team member. Or you can make a one-time donation to the team or any individual member.
My kids are so excited about this, they set up an impromptu drink stand in our front yard this evening to raise money for our team! Many of our good neighbors stopped by and couldn't resist the charming little fundraisers with their cooler full of ice-cold bottled water and soda!
Please consider joining our team or making a donation by using the link at the top of this post. Once again, the support of my family and friends will accomplish great things!
Thursday, August 12, 2010
Last year in school my son learned about "possible/impossible," "plausible/implausible," and "certain." During our many car-versations during Tuesday's travels around the medical community, we were discussing how good it has been for us. He would interject these words into the conversation:
"When you were first diagnosed it seemed IMPLAUSIBLE that you would still be around today." ("But Jake, it wasn't IMPOSSIBLE, as I am now demonstrating!")
"They felt CERTAIN that you could not survive five years." ("Maybe, based on statistics, but it is POSSIBLE that I could...and if it is God's will that I should, it's CERTAIN that I would!")
Tuesday, August 10, 2010
My son accompanied me today. I considered him my lucky charm, and he beamed at the idea.
My elation over this news, combined with my typical sick humor, tempted me to tell my family and friends that "the doctor gave me six months to live..." ("...until I have to come back for my next MRI!") I considered how nice it will be to come back next February, after I have passed the five-year survival mark, and how nice to finish out this year without having to think about MRI results again.
And then the folly of my thinking caught up with me. This is certainly good news, but it is not a guarantee of life for six months. (None of us has that.) The MRI doesn't decide whether I live or die; it just shows us whether there is anything interesting going on in (what's left of) my mind. Life is still precious and should never be taken for granted. If I really do have a reprieve for the next six months, I feel a greater sense of responsibility for what I choose to do with it.
Today our family chose to spend it celebrating and thanking our God -- and the many people who cushioned me with their prayers to Him on my behalf.
Sunday, August 01, 2010
1. Lots of bedrest.
2. No bending down to pick up anything.
3. No lifting, vacuuming, or climbing stairs.
4. No driving.
5. No loading/unloading the dishwasher.
6. I must subject myself to endless pampering by my well-trained family.
(I know -- poor me!!)
All went well with the procedure, and my surgeon is hopeful that this time my new eardrum will have a better chance of grafting more successfully. He described a lot of what had to be done to overcome the amount of radiation damage inside my ear. (I'm glad I was asleep!)
Most of all, I relish once again the opportunity to deal with long-term side effects of treatment. As I talked with the doctors and nurses at the hospital, I often had to confirm that, yes, my craniotomy was in 2005. Yes, my radiation treatment was in early 2006. Yes, it was for glioblastoma. Yes, I'm aware that I am very blessed!
Saturday, July 24, 2010
(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.
Wednesday, July 14, 2010
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
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.
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
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
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
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:
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
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:
Tuesday, April 27, 2010
Monday, April 26, 2010
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
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
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
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
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
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
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:
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 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.