Afraid of Flying?

When I was a teenager I used to scoff at people who were afraid to fly, because as a young traveler I found it to be quite convenient. I'd board, fall asleep, and wake up at my destination.

Later, as a college student, I transformed into a nervous flyer after hearing several air disaster stories in the news. Two in particular were caused by stupid mistakes and were really traumatic. One involved the collision of a commercial jet and a student pilot who forgot to check in with air traffic control, and the local schools had a lockdown so that children wouldn't walk home and see body parts that rained down from the sky and lay scattered on the ground. It was gross and made me think twice every time I boarded a plane.

Then I had an interesting experience on a business trip with my husband more than a decade ago. On a flight from Los Angeles to Houston, our anticipated "on-time" landing was delayed for an hour due to heavy storms that closed the airport in Houston. The problem was the delivery of this news by the pilot: "Ladies and Gentlemen, I have good news and bad news." It was a little scary.

Another time, during a short flight from Oklahoma City to Dallas, the passengers near the window suddenly started pointing to the window, saying something about seeing lots of smoke and fire. I was in an aisle seat, so I had no clue what they were seeing. The window seat guy in my row must have seen my eyes get really big, because he leaned over and explained that there was a large brush fire on the ground, and the view from the airplane window was the source of all the excitement.

Because of the string of "mini-traumas", and because I would sometimes have nightmares about seeing planes crash (which reminds me of the movie, La Bamba), I routinely flew with a knot in my stomach and sweaty palms. It didn't keep me from flying when it made sense to fly, but it was still an uncomfortable thing to do. I knew it was an irrational thing. I know all the stuff about air travel being so much safer than road travel. Irrational fears are exactly that - irrational.

Enter a deadly, menacing form of cancer. As our family recently boarded the plane together for our trip to Disneyworld, I had no fear - no sweaty palms - no knot. In fact, I almost - ALMOST - had a flicker of disappointed surprise when we landed safely on our return trip. (Talk about irrational!) Granted, I think we should all live long, healthy, and productive lives. I don't want to cheat my children out of the opportunity to grow up, and I also don't want them to become orphans. But the idea of a plane plummeting from the sky with our family intact on board was less scary than the idea of cancer taking me alone and leaving them behind.

It's so silly. Bird flu, terrorist attack, natural disaster - things that are truly undesirable and worrisome - don't worry me at all for that same reason. The Second Coming and all the turmoil that will supposedly precede that event - small potatoes on the Worry Meter. Stacked next to brain cancer, they seem pretty tame. It's the classic case of thinking other problems would be easier to handle (grass is greener). Or maybe it's my cancer-riddled mind's way of searching for an easy "out". Whatever it is, it makes me shake my head and laugh at myself for having such loony thoughts. (Maybe the tumor triggered a loony thoughts button???) Each one of us has a time to be born and a time to die. It's okay (even now, I can say this) to let the Lord be in charge of that stuff.

Even so, I sure did like flying with dry palms!

When You Wish Upon a Star...

...Makes no difference who you are;
Anything your heart desires can come to you.
I sure like that little song;
I sure hope that it's not wrong!
I have dreams of remission -
Hope they come true!
It's been a long while since my last posting, and while it's nice to know that people notice, I should assure my dear readers (some of whom have expressed concern) that my absence was not for any bad reason. After the Easter/Messiah whirlwind I was a flutter of activity getting client projects finished and preparing things at home so that we could take our much-anticipated family trip to Disneyworld.

This trip was a Christmas gift from my mom, who always knows what to get the person who has everything (including cancer). We were able to enjoy the trip together with Mom, my brother, Dr. Jim, his family (wife Rachel and children Madison and Ethan), and my "baby" brother (who is approaching the quarter-century mark), Blake. Our group was large enough to qualify as a "Grand Gathering", full of many magical and wonderful experiences.

We blitzed through the entire World in five days (four full days and two half-days)and still had time to hang out in the hotel pool. We met with/took pictures with/got autographs from almost every Disney character and/or princess that you can think of. We ate enough fabulous food to look like we were all on steroids. We did all the "headliner"/must-see rides & shows & other attractions (except that I was a good patient and stayed off the rollercoasters and fast rides, which but for the advice of my doctor I would fearlessly go for). We stayed in the Animal Kingdom Lodge, where we had giraffes and zebras and other animals feeding right outside our balconies. We had a great time.

To Jared: It was fun to relive our 1993 "second honeymoon" trip to Disney World without having to play "what's colder than me." (Inside joke!)

To Jim: Thanks for the mole checks at the pool and the housecall when Mom and I both got the same funny rash on our ankles!

To Rachel: Thanks for taking on all the many details of trip planning, so that we could have so many awesome activities!

To Madison: I'm glad we were able to celebrate your 7th birthday together in the Magic Kingdom! I'm sad that you got sick the next day, but glad that you got better. You are a beautiful young lady, and Jacob looks up to you as his older cousin.

To Ethan: You did a great job, man! Jacob loved playing with you as his younger cousin! His favorite memory is playing light sabers with you!

To Blake: "If you knew Suzy like I knew Suzy..." (Inside joke!!!!)

To Jacob: Remember that just as in life, most of the things we did were not as scary as you feared! You were the most charming little prince in the whole Disney World!

To Emma: You were born to be a princess, and while you won't remember this trip, I'm still glad that we could see it through your eyes.

To Mom (aka The Fairy Godmother): Thanks again and again and again for making this magical dream trip come true!

And we all lived happily ever after!

p.s. Pictured from left to right are: Emma, Jared, me, Madison, Mom, Mickey Mouse, Jacob, Ethan, Rachel, Blake, and Jim

Stepping Out

We added some new Easter decorations to our home this year. Two are framed pictures that caught my attention in the store, because they both depicted Christ emerging from the tomb. One is a front view, and one is a rear view perspective.

I have seen many pictures of the empty tomb. I have seen many pictures of the Resurrected Christ appearing to his disciples, to Mary, etc. The "stepping out" part of the story has always just been implied until now.

The "stepping out" moment is one that is so dear to me, because it was that very moment when all of the things we suffer in mortality were rendered temporary. There is no sorrow, no disappointment, no sin, no illness, no pain, and no death that can't be overcome. He bore it all in Gethsemane. He died on Calvary. He was resurrected and fulfilled all that was required, so that the Atonement was completed. He has perfect compassion for all that we must endure, because He bore it personally. And ultimately, it all gets fixed someday. None of the messiness of life has to stick forever. We get relief from it someday. All of those pains were relegated to temporary status the moment Christ stepped out of that tomb and finished His work. It's an awesome moment to be captured by an artist.

As I was sitting among the bunnies and plastic eggs and grass - the other Easter decorations in our home - I was considering when I might finally take the time to pack up the box of Easter stuff and start setting out the summer decorations. But the "stepping out" pictures will remain on our walls as a comforting reminder of the very moment that gives comfort and relief to all that we must face.

I Could Handle Messiah

(My mom still giggles at that pun...)

After the performance was over, as I was making my exit, I couldn't help but marvel once again that this happened despite having cancer, surgery, radiation, and chemotherapy drugs invading the right brain, where musical ability and memory are controlled. I could remember. I could discern pitch. I could sing. It meant so much to me. I had my diva moment and sang my solo to the best of my ability. Later in the performance, my husband and I sang a duet, "O Death, Where is Thy Sting?" We were divas together. It felt great. (Although I hoped I wasn't throwing down a gauntlet by taunting Death with that song!)

The preservation of my musical ability is a miracle, a tender mercy, a great blessing, and more. It was a great gift. In addition, I managed to have enough strength to withstand the nearly 90-minute performance, despite having had so many previous days of illness and exhaustion. Sometimes I could barely endure rehearsals. My energy level during the performance was amazing. I feel very blessed and grateful.

We had a wonderful audience, and I was happy to know so many members of the audience. We had lots of local friends and family there, and we also had some who traveled from the Houston area and even from as far as St. Louis - just to hear me sing. It meant a whole lot to me to be able to sing to as many people as possible.

I don't know if this is my last Messiah performance. I pursued it as though it were, but I hope that it is far from my last one. My dad suggested that I should be like Cher, who has had ten "farewell" tours. My brother predicts that four years from now everyone will be rolling their eyes when I come in again for my audition - "Here comes Sister Oakes, saying it's her last Messiah AGAIN". I hope he's right. We don't know how long I'll be here, and we don't know how long my musical ability will last even when I am here. But all things are possible.

Handel's Messiah is not only an amazing oratorio, but the story behind it is remarkable, too. Handel's career was in ruins; he was bankrupt; his mother had recently died. He was about as down and out as one can be. With a little money from his mother's estate, and with the scriptural libretto from a friend, he began an intense, three-week process that was filled with inspiration as he wrote the entire score of Messiah. It not only defined him as a composer, but it allowed him to become a philanthropist who used the money from his work to free debtors and benefit orphans. Like the real Messiah, Handel's Messiah brought him from despair to glory. There is hope for all of us to be rescued from our deepest trials, and this was indeed something to celebrate. I was glad to be able to do it with wonderful music, surrounded by friends and family, savoring talents and abilities during this season of unknown duration, where they still exist.

Thanks to my brother Blake, these performances were captured on stealth video:

Gaggle Therapy

I recently started my maintenance dose of chemotherapy - high dose drugs for five days each month. So far it's going okay. The best thing was that I started another therapy around the same time.

Three of my good friends from high school came to visit with me this weekend. One is here for a week, two came for a few days, and while we always want it to be longer, it has been a wonderful time!

There is actually a group of five of us - I usually refer to us as the "gaggle". We hung out together in high school and sang in the choir and danced in Cloggers West and thought we would all get married to the cute boys we had crushes on and live around the block from each other forever and all that great stuff. As is typical, though, we all grew up and drifted wherever our lives took us. (I did marry the cute boy that I had a crush on, though!) We are spread out from Oregon to California to Utah to Texas.

Our last "gaggle" reunion actually took place nearly five years ago. We all had babies in 2001. For me, it was my first. For others, it was their last (or near to the last). But we all happened to be visiting in Utah during Thanksgiving weekend, and we met up for dinner with our babies in tow, and it was really fun. Since then we had our 20-year high school reunion, but I don't think the five of us were all together at that time. But meanwhile, our friendships have endured the test of time.

Cancer has infiltrated the gaggle twice. One of our friends was diagnosed with breast cancer a couple of years ago, and I drew the black bean for brain cancer. Twenty-plus years after playing and singing and gossiping together, we are now realizing how precious life is, and we are supporting each other as best as we can. Cancer is a lousy excuse for a spontaneous reunion, but I was glad that we had one! Only four of the five were together this time, but hopefully we'll catch up somehow. It was a really fun time. We giggled through the pages of our yearbooks, we put on our clogging shoes and danced, we sang karaoke, we ate great Tex-Mex food and toured Dallas (I'm hoping to recruit future Texans), they came and heard me rehearse Messiah, and we just had an all-around great time. Friends that are still friends after graduation and college and husbands and kids and careers and moves and life crises and all that stuff. Throw us back together and we're transported back in time...to the good times! Add my bestest friend from high school, aka my high school crush, aka my husband, Jared, and we were all twenty years younger - regardless of what state our bodies might be in!

This is a time of my life where I have enjoyed visits from both family and friends, and it always does me a world of good. It reminds me of how wonderful my life has been, and how wonderful it continues to be. I am blessed in many ways.

Hurdle Cleared!!!!

The MRI today was good! We are breathing a huge sigh of relief.

I start a high dose of chemo on Friday and take it for five days every month. In four weeks, before starting the next five-day dose, I'll go in for neuro tests. Four weeks after that, before starting the third five-day dose, I'll have another MRI scan. This will be the routine: monthly neuro tests & scans every other month while taking high dose chemo 5 days a month. If something pops up or progresses, we have something else to deal with. But for now, all is as well as it can be.

One thing that came to my mind today was the realization of not only how many prayers were offered on my behalf (THANK YOU AGAIN), but also how many times I prayed for this outcome today. It was more than the routine prayer schedule, to be sure. So my question for myself today was whether my prayers of thanksgiving will be as numerous and frequent as were the prayers for help with this scan. I definitely need to step it up. And I guess it would also be a good idea, while I'm thanking those of you who prayed for me, to ask you to join with me in a prayer of thanksgiving for a good result today.

A Moment of Suspense

This is it - that first "how's it looking" MRI scan. I go in tomorrow morning, and I leave the MRI facility with films in hand and take them directly to my oncologist. I'll know pretty quickly how things look. They have all the prior scans, including the ones that were done during radiation treatment, so they will know all about the "area of concern" and whether it looks the same now.

Based on my clinical performance, the expectation is that the scan will be good. I hope they are right. It would mean smooth sailing for our upcoming Disney trip. For my upcoming Messiah performance. For, you know, LIVING and stuff. And then I start my maintenance regimen of chemo and we keep on monitoring unless/until we find something to deal with.

This is another big prayer moment, and another nervous moment. I keep telling myself, "IT IS WHAT IT IS." This is just a matter of finding out so we can deal with whatever we need to deal with. Or hopefully just a matter of finding out that it's okay for now, so I can have that peace of mind. There will be many big prayer moments and many nervous moments. I have to remember how to ride these in a way that will keep me from going nuts. It is what it is...it is what it is...it is what it is...

Let's just hope that it is...good news!

Handel's Messiah

One of the highlights of the Easter season for me is our local community performance of Handel's Messiah. Once again, I am singing with the choir, and once again I get to sing one of my favorite solos: "O Thou That Tellest Good Tidings To Zion". A new thing this year is the addition of my fabulous husband in the choir, because he and I are also cast to do an alto/tenor duet of "O Death, Where Is Thy Sting?"

I have mentioned Messiah before, and how glad I was during an earlier rehearsal to realize how much of the music I could remember. It's such a miracle that I can sit here with cancer in my RIGHT BRAIN, of all places. That's where musical tones and pitches are recognized, and where musical rhythms are processed. Where memory happens. Where just about everything relating to this performance was potentially affected. And it wasn't. This is one of my favorite "tender mercies." Only the Lord knows how much it means to me to sing. How much I love music. My abilities in this area have been literally untouched by my cancer and the subsequent treatments that have been invading that part of my brain.

My performance this year is a celebration of that miracle, and an expression of my gratitude for this continued talent. What better way to use that talent than to bear witness through song of the Messiah? The One who bore all that I will ever have to endure. He not only bore my sins for me, but He bore all of my suffering, disappointment, pain, fear, and grief. And because of it, I will someday overcome all of these things. I will even overcome death, because He did. I am just so excited to celebrate Easter in a fitting manner, singing praises to our Savior - the Messiah - Jesus Christ.

My husband makes a face when I say this, but we really never know if this will be my last opportunity to sing Messiah. Statistically, it would be, but I'm pooh-pooh-ing the statistics. I'm hopeful that a miracle will keep me here for many Easters. But regardless of how long I stay around, we have no guarantee that my musical ability will always remain as it is. I hope it will be, but since we just never know, I want to make the most of today's voice. Today's song. I want to make it my very best, and savor it and enjoy it as much as I can. I hope we have a big crowd to sing to!

The performance is Easter Sunday, April 16, at 7:00 p.m., at the Church of Jesus Christ of Latter-Day Saints, 2801 Eldorado Parkway, McKinney, Texas. The public is welcome, and it is free of charge. Come and hear me sing my solo. Come hear me sing a great duet with my very talented husband. Hear me sing, so that in case next year I can't do it anymore, at least I will know that I sang to as many people as I could. Come early to get a good seat, and stay afterward to say hi and get "thank you" hugs from me as I exit the podium!

Worse I felt = better I got??

I keep thinking about that Lance Armstrong quote: "The ironic thing was, the worse I felt, the better I got."

Boy, if that's the true measure of improvement, then I must be sailing toward remission, because I feel pretty darn lousy!!!!!!

I am transitioning to a new seizure medication, which is nice, because the fevers and chills are finally going away. My personal record was 105.8, and I'm glad to know that it can remain on the record books for a while without challenge. A week of high fevers has taken its toll on me, though. I feel pretty sapped and sore and miserable. In addition, the new medication has its own side effects - especially dizziness and fatigue - so basically I would easily fail a sobriety test. Good thing I neither drive nor drink!

The silliest thing is this "dysesthesia" on my back. It basically feels like my back is sunburned. I feel it when I sit or lie down and my clothes come into contact with my back. I feel it when I walk, and the impact of each step is painful. I feel it when my husband lovingly hugs me or caresses my back. Love the thought - but OWWWW!

Right now I spend a lot of time in bed, trying to recover. But I feel like an invalid. I am so limited as to what I can physically do right now. It's frustrating. I prefer to feel vibrant and alive, like I did when I could clog dance and run on my treadmill. Instead, I feel like someone who is dying, and that's not the feeling I want right now. I want to be feisty and full of energy to fight this battle. I want to be physically fit, because that may be a lifesaver. I realized that if I am sedentary and packing on weight again, that's a sure path to developing diabetes. If I develop diabetes, that's a sure path to being a non-ideal surgical candidate. And that means I may be more likely to have an "inoperable" tumor, if one recurs. And an inoperable tumor may simply mean a matter of time before my time is up. Not a good way to go. I really want to get up and run. But I can't. I can barely walk across the room at a normal pace. I usually shuffle slowly like an old man in a nursing home. It's crazy. I keep thinking of the Lance Armstrong quote, and I tell myself I must be getting better. And in time, I will also feel better. At least, I hope!

I lack nothing

(By the way, as a postscript - no pun intended - to yesterday's post, KPGR radio is on FM 88.1 in Utah Valley - that would be an awfully low temperature! I was miserable with fever and chills this morning, it got better this afternoon, and it's cranking back up tonight. Really looking forward to a remedy soon.)

On Friday evening, as we sat in our temple, I experienced the contrasting conditions of discomfort and spiritual enlightenment. I was miserable with fever and chills, and I was anxious to know the MRI results. At the same time, however, I was in a place that helped calibrate my focus back to "the most important thing", and everything else just becomes details. It is always a wonderful place to be.

At the conclusion of our ordinance work, as we were sitting and reflecting in the Celestial Room (a beautiful room that represents the presence of God), the thought occurred to me that "I lack nothing." It's true. I lack nothing.

I have everything that I need to reach my highest potential. I have the opportunity to live on this earth and receive a physical body (even though it got cancer at age 38, it's still a blessing to have). I have a Savior who bore my sins and my sorrows and pains, and who atoned for me and was resurrected for me. His gospel has been restored to the earth, giving me access to the saving ordinances and blessings that come through restored priesthood authority. I was born of goodly parents who taught me the gospel, so that it has been a part of my life from its foundation. I have a very loving and wonderful family - including the family I was born into, the family I married into, and the family my husband and I have built together. I have a sure knowledge and testimony of my Heavenly Father's love for me, and His watchful care over me. I know that, no matter how violent this rollercoaster ride becomes at times, I can always trust in Him. I have been blessed in the past with experiences of adversity, which taught me so much and shaped my trust in Him. He will always do what is best for me, and what will ultimately bring me "through thorny ways" to a "joyful end".

My daily needs are always met through a bounty of blessings. My husband's employer (really, guys - buy LOTS of Mary Kay stuff!!!) and my wonderful clients give us a secure living. I have access to very capable and competent medical care, using advanced technology. We have an army of angels from my church family, who make sure I have any help that I need, from driving to childcare to meals to laundry and housekeeping, to ANYTHING. The Lord uses His children to bless His children.

In addition to what I "need", I have also been blessed with special delights: talents and abilities and opportunities to use them, beautiful and happy relationships (including the great love of my life and the two great joys of my life - all of whom live in my home), an appreciation for good music and an opportunity to hear it often, and a long list of "tender mercies" that have been given to me.

I realized that when it comes to the things that I need, I lack nothing. Nothing. I can't think of a single thing that I could possibly need, that isn't here or ready to show up as soon as it is needed.

Is there something that I want? Yes. I want complete remission of this cancer. For-evvvvv-er. I want to live long enough to raise our children. Do I lack these things? These are things that remain to be seen. We always get what we need. We sometimes can also get what we want, if it is not contrary to the will of the Lord. I hope I get what I want, and I know that by putting my righteous desires before the Lord in prayer, I reveal my heart to Him.

The power of negative thinking?

MRI result = negative! "Completely negative - everything looks exactly as it should." Just got the results today.

While I am SO relieved at the news, and while I marvel at the sophisticated technology that is available, I have grumpily thought to myself that the process of diagnostic imaging is often barbaric. With the exception of some ob-gyn ultrasound monitoring, the process is performed by a technician who is looking at the image while it is being taken. This technician is highly trained, and I'm guessing that part of that training involves "Advanced Poker Face".

Getting test results is not like what I remembered from the days of getting college exam test results at the BYU Testing Center. When I was a BYU student, we often took computerized exams (fill in the little circles). When I was finished, I would exit the exam room through a special exit room where I would hand my completed test to the testing center worker, who would run it through a scanner and hand me a printout with my test score within minutes (depending on how many people were in line before me). Maybe that's why I'm into immediate gratification when it comes to obtaining information.

Instead, I am at the mercy of the facility's immediate access to a radiologist, who reads and interprets the image. It's a function of organizational structure and communication channels between technician and radiologist, and not anything against radiologists - I have a friend who is a radiologist! And then the radiologist communicates the results to my doctor, who may want a written report and/or a copy of the actual images. My doctor does whatever they need to do with the information, and then if I cry "uncle" loud enough, I get the result.

I understand the necessity of the process, but I really wish there were a more streamlined way to manage it. I think the thing I dreaded most before I knew the result was if it were going to be one that required more testing.

Meanwhile, my fevers continue to move up and down the FM dial. 104.5, 103.8, 102.2, 101.9, 97.8, 99.9, 100.3, 104.1, etc., etc. It's my inner disc jockey. I was a disc jockey during my senior year in high school. Our high school had a radio station that played top 40 hits, and seniors could take a class in "radio", which included a part-time assignment after school as a disc jockey for the station. KPGR - I remember the call letters, but I can't remember the spot on the dial. I'm hoping my current "station" starts to consistently stay on the "negative" side of 100 degrees. The fever doesn't bother me as much as the chills. Those are a constant discomfort, no matter how many layers I pile on to keep me warm. We are going to change my medication on Monday, when my oncologist and neurologist can come up with an alternative. The expectation is that it will provide immediate relief, so I'm anxious to prove that theory correct.

O, that it were only a fever!

You know you have brain cancer when...

...Meningitis sounds like good news! I received news today that the lab work came back with absolutely no indications of any kind of infection. And I received clarification that the main reason the MRI was ordered was not really to look for signs of meningitis, but because of the strange ache & dysesthesia (vocabulary word of the day) in my upper back. They want to be cautious and hopefully rule out tumor progression into other parts of the central nervous system. Chances are, they say, it will be negative. But to me, the idea that it came up as a prudent course of action in response to this mystery feeling in my back, makes me more than a little worried.

The thing about brain cancer is that it doesn't metastasize to other parts of the body (it just makes swiss cheese out of your brain), but it can definitely spread to other parts of the central nervous system, like the spinal column, the meninges, and cerebral spinal fluid. They are fair game, because they are all part of the same general group of body parts.

When faced with worrisome things, my inital reaction is to play through all the possible scenarios (kind of like that computer on the movie Wargames). So I'm already thinking through possible positive results and the treatments that would follow. Would a tumor on the spinal cord be inoperable? Would I risk paralysis? Would radiation be tried instead? Does it become possible to spread elsewhere, once it is outside the brain? Is this a tumor recurrence that makes me eligible for experimental treatment?

And what I really wish I knew...with all this thinking a few steps ahead of the game, why am I not a better chess player?

Meanwhile, the fever and chills continue. Because there is no sign of any infection, the latest theory is that it is some kind of reaction to my anti-seizure medication. The timing makes sense, because this started after the first week of tapering down on my radiation steroids. Those steroids may have been masking any earlier reactions. We're thinking about that, and we may have to change to a different medication if the fever continues.

But seriously - I was almost rooting for meningitis. Meanwhile, we will pray and pray and pray and pray (and we know that others will, too - THANK YOU), and hopefully we'll just be ruling something out instead of reaching a grim diagnosis. No matter what, though, those prayers will be helping me in many ways. All will ultimately be well, I continue to remind myself. What I will have to endure until then is probably going to be rocky at times. But I will always be blessed with what I need to endure all things, and the prayers of others really help unlock those blessings for me.

Is that a radio station, or my temperature?

104.1 - KFEV

Yeah, that was me at 3:00 this morning! It's closer to normal now, but it was a rough night.

Of course, then I remembered something I read earlier about hyperthermia as a cancer treatment. Hyperthermia is the exposure of tissue to high temperatures, damaging and killing cancer cells while preserving normal tissues. So I laughed to myself and wondered if maybe this fever thing was God's way of treating my cancer with hyperthermia!

Fever!

...in the morning, fever all through the night...FEVER, when you kiss me, fever when you hold me tight...

Well, anyway, I woke up this morning after a restless night with a fever of about 102. I don't really have any other symptoms, so it was kind of disturbing. And because I also have some neck and upper back soreness (which may simply be due to the difficulty finding a good sleeping position right now with a sensitive head), my oncologist wants to rule out meningitis. They also did some neuro tests to check for clinical evidence of tumor progression to the spinal column (glioblastoma can rapidly spread throughout the central nervous system), and I am told that those all looked good. However, after requesting a substantial blood donation for lab tests (normally when I give away that much blood I get juice, a packet of cookies, and a free t-shirt from the blood bank), my oncologist also ordered an MRI scan of the thoracic spine. I'm told that this is to decide whether a spinal tap is needed, because infection might show up as inflammation on the MRI. But I also worry that maybe she wants to be sure and rule out tumor progresson on the spine, and I wonder if that is the real reason for the MRI. I don't know. It's kind of creepy. The scan is scheduled for early Friday afternoon, so we'll know more then. Hopefully we'll find a whole lot of nothing.

...just in case anyone wants something new to pray for!

Homecoming Day Photo

...Just thought I'd share our updated family picture, taken on our son's "Homecoming Day" - March 15. (See, I told you I have more hair than my husband!) I'm also sporting my "Livestrong" band as I hold on tight to my little boy's dear hand, and I'm clinging like Velcro to my Prince Charming as we both hug our baby girl. Our for-evvvvvv-er family. Thousands of years from now, after we all have our turn to go the way of the earth, we'll still be a family. We'll still hold tight to each other. We'll still love each other. The sorrows of mortal life will be a sad but distant memory, while the joys of our relationships will continue to be vivid and bright.

My Blog is Blank!

It's nice to know that people notice when something is up! I received a flurry of emails from concerned readers, who noticed that my blog was "blank" when they went to my URL. Sure enough, I had the same problem. I have notified Blogger.com, and hopefully they are fixing it. Meanwhile, I am posting this in the hopes that it will kickstart a new publishing of my blog in order to restore it. And meanwhile, for those who kindly expressed concern for me, rest assured that the problem lies with Blogger.com, not with "the blogger"!

p.s. - I think it helped!

For those who comment

As many of you are aware, this blog has a "comment" option, where readers can post a comment to me. The comment remains on the website, and also comes to my email account. They are always welcome and appreciated, although sometimes they come to me from anonymous sources, where there is no opportunity for me to reply directly to the author.

So, first of all - for those of you who do comment: THANK YOU! Your comments have been supportive and encouraging, and they always make my day. I wish that I could reply to you directly, but for now, here are some ((((HUGS)))) and big thanks for you.

One comment came from someone who is LDS, whose husband was also diagnosed with glioblastoma multiforme. They are also adoptive parents and the husband served in many of the same callings that I have held. He has been a year out with no recurrence. I would LOVE to find a way to get in touch with these people!!!!

Other cancer survivors or loved ones have contacted me, and I appreciate that very much. Hopefully we can share stories of survivorship for a long, long time.

Some have asked questions in their comments. So here are some of those questions along with my answers:

Q. Are my children's adoptions "open" adoptions? Do we send updates to the birth parents, and are they aware of my cancer?
A. Both adoptions are considered "open", in the sense that we have had face-to-face contact with the birth mothers, and we have each others' identifying information. It works well, because we are all secure in our roles relating to these wonderful children. Birth moms gave these children healthy, beautiful bodies, and placed them in loving families. Our job took over shortly after birth. We are to be their parents, and care for them and raise them and love them. (And help them become part of a for-evvvv-er family.) We have email contact with Jacob's birth family, and we love sharing photos and updates so that we can each see how this process has blessed all involved. We love his birth mom so much and enjoy hearing how she is doing. Emma's birth mom has been less communicative for now. We sent her some pictures and encouraged her to write us back, but we haven't received a reply. Maybe someday she will write us, but we want to respect her privacy and her feelings, which are probably tender at times. We love her, too. Jacob's birth family knows about my cancer, and is praying for me. Emma's birth mom does not know about my cancer.

Q. What is a "gas pump virgin"?
A. ME! What this means is that I have never pumped gas. NEVER. (So hey - we know the brain tumor didn't come from petroleum fumes!) When I turned sixteen, one of my friends gave me a book called, Real Women Don't Pump Gas. It was a humorous book, but I decided to take it seriously. Plus, at the time I was dating Jared, who was already practicing his Prince Charming skills. He always made sure my tank was full. And when he spent two years serving a mission in Japan, I didn't have a car for most of that time. I was going to college and I lived close to campus. And when I did have a car, I learned that there was a gas station near campus that did full-serve at no additional charge. After I married my Prince Charming, he let me continue this silly obsession. And now that I can't drive anyway, the matter is moot.

Q. How would you prefer people to talk about what you're surviving? That is, not mention cancer by name and just keep on "as normal", or mention it straight out in conversation, or say "I'm sorry that you have cancer", wait until you bring it up - or something else? Or does it change by the hour?
A. I happen to be an open book about this kind of thing, in case you haven't noticed from my blog! On the other hand, I know that in this situation it may be hard for people to know what to say, especially since it seems like a very touchy subject. But for me, it's such a part of my life that I am more desensitized to things than most people would expect me to be. It is surprisingly "not touchy" for me to address. I have had many people initially come up and tell me things like, "I heard about your situation, and I just wanted you to know that you're in my thoughts and prayers." And that is really, really nice to hear. Or people who have already broken that ground might ask, "Hey - I've been thinking about you - how's it going for you today?" That's a good one, because it's specific and easy to answer ("I'm a little tired today, but I'm excited because I'm feeling a lot better than I thought I would be right now.") I've had curious people ask me detailed questions about certain aspects of my treatment, or the testing I will do, etc., and I'm totally fine with that. Specific questions are always easier to answer than than the general "How are you?" (I always think, "Fine...except, oops - not really fine, because I have cancer.") As far as whether you should mention cancer by name, it's really okay with me to hear it. It is what it is, and it's no big deal to call it what it is. I am a little more cautious about what is said within earshot of my son, though, because even though we have prepared him with "the talk", I don't want him to overhear things that might scare him. But as I said before, I'm generally an open book about this and don't mind people approaching me and asking me about anything, or sharing their love and best wishes and hugs - and prayers!!!!

For those who comment, again - thank you. If you ever want to contact me directly instead of using the comment feature, please feel free to email me at (I'm going to spell out some things so that it doesn't look like an email address to spam machines who crawl through this site): kristaoakes(at)gmail(dot)com

My Dream Team

I've decided to be completely shameless in promoting a fundraiser for the American Cancer Society. They have been very generous in their support resources for me, and they also provide a lot of good education that may help save lives through early detection (unless, of course, you have glioblastoma multiforme, for which there is no early detection). The other reason I am participating in this fundraiser is that it is an activity that I CAN do. It's life-affirming, because it is a physical activity. It's the Relay For Life.

The Relay For Life is going to take place on May 5 & 6 in Plano, Texas. It starts at 7 pm on Friday, and goes until 7 am on Saturday (because cancer never sleeps). The way this event works is that each team has to have someone walking or running on the track during the 12-hour relay. So obviously, the bigger the team, the less time each person has to spend on the track! There will also be special things there to honor cancer survivors and memorialize those who have lost their battle. It's a very super-cool thing, and I am just really excited to do this. And I think it can become a really fun event, where we camp and eat and play and take turns on the track. They will provide food and t-shirts and stuff for those who participate.

I sent out an obnoxious email to as many people as I could, asking them to join my team. Now I am being equally obnoxious by posting information in my blog. I hope to form a really big team and have lots of fun. For those who are interested in joining my team, simply go to www.acsevents.org/tx/relay/plano and sign up to be on "Krista's Dream Team". While you are on the website there will also be opportunities to make a donation and dedicate a luminaria to a friend or loved one (cancer survivor or lost battle with cancer), which will be displayed at the event.

I look forward to hopefully seeing lots of these readers there!

Lucky me

I continue to be blanketed with many deeds of service, from childcare to meals to house cleaning, to driving, and anything else that I need. It's incredible. One of the women from my church who came yesterday afternoon to help with childcare also gave me a profound thought. Something so awesome, I can't help but share it.

In order to understand it, I should preface with a little background of LDS doctrine, which includes the concept that before the earth was formed, we lived as spirits with our Heavenly Father. He had a plan for us, which included the creation of the earth and our being born into it so that we could receive a body and use our free agency during mortality to be tested and tried, and we would have a Savior who would help us overcome both physical death (through the Resurrection) and spiritual death, or sin, (through the Atonement) so that we could one day return to our Heavenly Father. Satan rebelled against this plan and was cast down, along with many spirits who chose to follow him. They were denied the opportunity to be born and receive a body on this earth. In the book of Matthew, there is a story where Jesus comes across two men possessed with evil spirits. As he is casting them out, the spirits beg him to be put into swine. They go into the swine and drown themselves. But to them, it was at least a chance at having a mortal body.

My friend's comment was that no matter what physical infirmities we have to endure in this lifetime, no matter how imperfect our bodies are, there is someone who is jealous of us. There are spirits who lost their chance to be here, and they probably look very longingly upon us, even when we are in a hospital bed or on a radiation table, or when we are taking painkillers or anxiously awaiting the results of a medical test. Even if our lives are shorter than we want them to be. I picture them looking at my situation and sounding very much like Napoleon Dynamite, when he looks at Pedro's bicycle and says, "LUCKY!!!!" I have something that they envy, and it's just "too bad/so sad" for them.

Tomorrow is St. Patrick's Day, and while I'm not Irish, maybe I just have luck on my mind (ooh - I hope literally) because of what my friend said. I am lucky. I am able to participate in the big plan. I hope this plan needs me hanging around here for a long time so that my kids will have their mom. I hope this plan needs me to stay here and grow old with my husband. I hope and pray a lot. But regardless of what is in store for me, I realize that I am very lucky.

Everything is a neuro test

It's funny how any situation can put a different pair of "glasses" on, so that everything is seen in a new way. For example, right now, everything seems like a neuro test. If I go out to get the mail, and I bound (carefully) up the front steps leading to my house, I notice how coordinated my actions are, and I think: "Good - I passed that neuro test!"

The other day I was sorting socks in my closet, and I began enumerating the neurological functions that were required in order to complete that task: short-term memory, organizational ability, etc. Last night I sang at a women's group event at our church, and it was a female barbershop quartet version of "You'll Never Walk Alone", and I had the "lead" voice. I sang those tight harmonies and all those words from memory. Of course, it was because I couldn't find where I had put my copy of the music, so I had to take off a couple points for that!!! Today I was filling out my son's Scholastic Book order form, and I added up the totals in my head. Self-administered neuro tests - and all passed!

By the way, the words to that song I did last night are very relevant to me:

When you walk through a storm, hold your head up high
And don't be afraid of the dark;
At the end of the storm is a golden sky
And the sweet silver song of a lark.
Walk on through the wind, walk on through the rain,
Though your dreams be tossed and blown,
Walk on, walk on with hope in your heart,
And you'll never walk alone; you'll never walk alone.

Hey, hey - I just put that down from memory, so I guess I just passed another one!