Love & Life & Embracing Differences

Over the past few years, I've started a lot of my blog posts (and Facebook status updates ... and updates on basically every social media platform) with apologies for my long, unexplained absences.

I always have a solid explanation for why I've been missing in action.

Life has been busy ...

I've been sick ...

I didn't have access to the internet ...

Things were just a crazy, mixed-up muddle of a mess ...

While these excuses have been 100% true, they don't tell the full story. And I feel like I need to tell the whole story. I've started this blog post dozens of times over the past couple of years, and I've never finished. But I promised myself that I would do it this time, so I've been sitting at my desk for nearly 36 hours, typing and deleting and typing things over again, until I can get it right ...

You know about my brain tumor. You may have even read the long, multi-part story about it. And all of the follow-up stories about how dealing with a brain tumor can be difficult & scary sometimes.Yet I know how scary the phrase "brain tumor" can be, and I don't want to worry people that I care about, so I've adopted a habit of downplaying things maybe a bit more than I should.

But I'm tired. And I'm scared. And this is a super-heavy burden to carry on my own, so I'm just going to lay it all out right here and hope that the load won't be quite so heavy when I have to pick it up again ...

Here are the things you need to know about me:

1. Because my brain tumor is in the brain stem, it literally messes with every single signal that travels from my brain to the rest of my body. Every single one. So if my elbow hurts, the injury is almost never actually on my elbow. And I have to go over my entire body to find the bruised shin or stubbed toe that's causing my elbow to hurt. And even the smallest emotional stress translates into super-intense physical pain.

2. Remember when you were really little and your mom told you "Don't make faces, or your face might freeze that way!" and you laughed at the silliness of the sentiment? ... Yeah, I have to be very careful about how wide I open my mouth when I yawn or something. Because, yep. My face might freeze that way. (I've totally stopped eating grapes, because if I accidentally eat a sour grape and my mouth puckers involuntarily, it might stay that way for an hour or two. And it hurts. A lot.)

3. Because my brain has to constantly adjust to the chaos of mixed/misinterpreted signals, it auto-corrects just about EVERYTHING. This can be a good thing. For example, I've never experienced jet lag, because as soon as I look at a clock in the new time zone, my brain adjusts to the new time. But it can also be a weird thing. For example, I have a really hard time hearing accents, though my family swears I pick up every accent I hear. (The kids love to entertain their friends by talking to me in different accents to show how my replies will match whatever accent they're adopting - including totally made-up accents.)

4. Optimism isn't optional for me. My brain doesn't know how to process fighting or negativity. I feel every harsh word as an intense, physical pain. Like hot skewers rammed through my body kind of pain. And if I get around people who are fighting, complaining, or yelling, my body literally shuts down. As in collapsed on the floor, still fully conscious but unable to move, speak, or even breathe properly. (When my kids were toddlers, they totally took advantage of this fact, because they realized that, if mommy told them "no," and they wanted to do it anyway, they just had to scream until mommy was paralyzed on the floor and couldn't stop them from doing it.) And it doesn't matter if people are fighting or yelling at me. Any fighting that happens where I can witness it is enough to literally paralyze me.


5. I'm totally not kidding about the brain auto-correcting thing. A few months ago, at my middle daughter's choir concert, I suddenly had a brilliant epiphany that could potentially solve all of the world's problems: "You know how, when everyone wears the same uniform, all of their physical characteristics blend together and you can't tell the difference between height, skin tone, or body shape anymore? We could all just wear uniforms every day!!" My oldest daughter and my husband laughed for about a week at that one. "That's not a real thing!" ... Which is how I discovered, at almost 40 years old, that my insistence that we could fix the world if we'd just stop looking for reasons to divide ourselves was truly insensitive and hurtful to those facing attacks on a daily basis. And my heart is absolutely breaking over this realization. (p.s. Now that I've realized I have this processing issue that totally isn't a normal way to view the world, I feel like I need to apologize to any that I might have inadvertently offended. If I ever made you feel like I wasn't taking your struggles seriously enough ... If my genuine inability to see the divisions our society faces has caused you pain ... I apologize from the bottom of my heart. I've learned that I need to more frequently check my perceptions against what's "normal," and hopefully I'm getting better. But if I've hurt you, please don't hesitate to say something to me!)


Over the past too-many-months, I have witnessed attacks against people who are Muslim, Black, Hispanic, Jewish, Women, Transgender, Mormon, LGBT, Refugees, Disabled, Athletes, Native American (I could go on and on) ... And although I don't personally identify with most of those categories, I am amazingly blessed to have wonderful people in my life who fit each of these labels. And so many other labels that ultimately don't matter at all. Human is human, and no matter how you slice it, we're all part of the same family. And my wonderful, annoying brain tumor won't allow me to separate myself from "the other," even if I wanted to. So every single time I hear someone I love and respect lobbing attacks at "those people" - no matter which group of people they're hurling hatred at, and no matter how far removed from my personal experience that particular group may be - it hurts. A lot.

And I wanted to speak up. I wanted to stand tall and raise my voice and use my strength and my privilege to be a protector for my friends and acquaintances who genuinely feared for their safety and the safety of their families. Instead, because of my stupid brain tumor, I spent too many days paralyzed, unable to get out of bed, unable to function, because the negativity was just too strong.

I literally couldn't speak up. I couldn't move. I couldn't act. I couldn't even breathe. I've cancelled plans with friends and neglected important household tasks because I literally couldn't function properly. And I've spent more nights than I care to count staring at the ceiling, wondering if this night might be my last. (Because when breathing isn't an automatic response ... when you have to consciously remind your lungs to expand and contract to bring in the necessary oxygen ... falling asleep and letting that conscious effort lapse is frankly terrifying. I never know if I'll actually wake up again.)

And I've felt so guilty that I wasn't being more proactive in supporting those who needed my support. So over and over again (dozens ... maybe even hundreds of times), I've started writing this blog post to explain. To assure you that I'm here. I'm watching. I'm praying for you. And I'm doing what I can - even if all I can do is send virtual hugs and lots of real love. But as much as I feel the need to explain myself, I also don't want to be that girl who just makes excuses for her lack of action. And I don't want to play that "me first" card, making the genuine pain and fear that so many are facing all about how those attacks and threats to others hurt me too. Because while it's true that an atmosphere of hate hurts every single member of our human family, it's not okay for me to put my own comfort and safety above those friends and family members who have been targeted.

So I hope this post serves as an explanation, and not an excuse. I hope you know that I'm here for you, even if I can't always carry your burdens as well as I'd like to. I'm praying for you, even if I can't speak. And I'm thinking of you always.

With that said ... I hope you'll understand if I shift the focus of my blog and my social media presence for the time being. I need to go back to actively looking for the things to be grateful for, even if it looks like I'm focusing on superficial things instead of the deeper issues facing our world today. So I will tweet about books that I love and books that I'm excited to read. I will search your twitter feeds for reasons to celebrate your milestones and send ample hugs and love. I will post recipes inspired by my amazing friends and tell the stories of how those recipes came to be. In a world that's often too weighed down by criticism and hate, I will focus on all the little ways I can share love.

I love you all!

God Loves Me: or Why I'm Selfishly Happy for Zachary Levi's Tony Award Nomination

This weekend marks the one-year anniversary of the day my world fell apart.

On May 28, 2015, the insurance company called to say that they wouldn't pay a single penny to help us rebuild the house that had been destroyed by mold and water damage (from a series of broken pipes), because my husband's military service had taken our family away from the area, and we weren't physically in the house when the damage occurred. I sat on the floor of the Javits Center in New York City (where I was visiting for Book Expo America) and sobbed, because I knew there was no way we could pay for the necessary repairs ourselves on my husband's military paycheck.

Our dining room in May 2015

It's been a crazy, insanely-difficult year full of disappointment, frustration and more heartache than I thought I could handle. But it's also been a year full of amazing support from friends, family and the amazing authors, agents, and editors in the publishing world who lifted and carried me - sometimes literally - when I didn't have the strength or ability to do it on my own.

From the awesome publishing folks who literally lifted and held me up until I had the strength to stand on my own when I was falling apart at BEA to the authors, agents, editors and readers who held an auction to raise funds to help pay for the mold removal ... the loan officer who worked late into the night for more months than I want to count, looking for ways to make the financing work so we could get the loan we needed ... and the contractors who have become friends as we've worked together to rebuild ... I've been blessed with more miracles than I could have ever imagined this year.

And yet ... I've struggled.

I'm a natural optimist, and as the name of this website implies, I prefer to look for the blessings in life's struggles. I'm usually pretty good at finding the miracles wrapped up in each challenge. But this time, being able to see the blessings just wasn't enough. Being grateful for the daily miracles kept my head above water, but just barely. And I still felt like I could barely catch a gulping gasp of breath before the waves crashed over me again, as repeated delays and unforseen difficulties pushed the rebuild farther and farther out.

But this weekend marks a full year that I've kept going. I've survived. And I can almost see the finish line ahead.

Our dining room in May 2016

To celebrate, I'm taking my family back to New York City. And this time, we're going to have only happy memories. We're going to see Zachary Levi (one of our favorite actors, who has probably the best singing voice ever) in the revival of She Loves Me (a musical based on one of my favorite stories - the same one that inspired the movies Shop Around the Corner and You've Got Mail).

To be honest, money is still extremely tight, and I've struggled with extreme guilt over spending our dollars on something just for fun when we're still working to pay for all of the unexpected costs of rebuilding a house from scratch. But this musical isn't just a fun family activity. It's a symbol for so much more. This is a life "do-over" in more ways than one.

Four years ago (in 2012), one of my favorite singers was playing the lead role in a revival of another of my favorite musicals on Broadway, and my husband was going to surprise me with tickets to see the show for my birthday (May 27, 2012). But that musical closed early - the weekend before we were planning to go - and I never got the chance.

So when I saw that Zachary Levi was playing the lead in She Loves Me, and we had an opportunity to get a military discount on tickets for this weekend's matinee, I had to find a way to scrape the money together. I bought the tickets, circled the date on my calendar ... and prayed with everything I had in me that this show wouldn't close early.

Yet, a small part of my optimism-starved soul was totally braced and prepared for the crushing disappointment of another show closed early. I don't know if I could have handled that.

So when the Tony Award nominations were announced at the beginning of this month, and She Loves Me  walked away with EIGHT nominations (including a Best Actor nomination for Zachary Levi!!), I cried so many happy tears. It felt like the Lord was telling me "I haven't forgotten you. If this is important to you, it's important to me." 

*Note: I've heard that Zachary Levi does a meet-and-greet with the fans after each performance and I'm REALLY  hoping for a chance to get an autograph (Phil is drawing a special picture for me to bring along for an autograph, just in case I get a chance) and maybe take a picture with him. I know I'll still have fun if that doesn't happen, but I'm still hoping. And praying.

Confessions of a Semi-Absent Friend (It's Not You. It's Me.)

As you know, 2015 was a a really difficult year for me.

The holidays (from Halloween, clear 'til the New Year) were especially hard, and I really struggled to capture the spirit of joy that usually comes so easily for me. For the first time, I experienced the seasonal depression that hits so many during the holidays. And though I tried to keep up the cheerful attitude I'm generally known for, I'll admit that I spent many hours hiding in quiet corners to cry so I wouldn't bring anyone else at the party down.

But the thing is, I don't think I was really fooling anyone. Though I tried to keep up a carefully-cultivated mask, though I wore a plastered-on smile and forced a chipper tone into my voice when answering the unavoidable "how are you?"-type questions, I know my recent aloofness has caused some hurt feelings.

And I want to apologize for being a semi-absent friend.

"When you cannot do what you have always done, then you only do what matters most." This quote by Elder Robert D. Hales has become my mantra in recent months. I've had to remind myself daily that I'm not a bad person just because I have to say no to things I've said yes to in the past. Still, I've been saying "no" so much more than I want to. And I've heard enough quiet murmurings to know that some of my friends and family are starting to think they aren't in my "what matters most" category.

So at the risk of sounding like I'm having a prolonged pity party, I wanted to explain why I've been absent lately. Why I'm not on Twitter or Facebook or this blog cheering your successes and mourning your losses with you. Why I've not attended so many social engagements, even when I said I'd really try to be there. Why I'm no longer the one jumping to volunteer when I see a friend in need, even when I desperately want to be there for you. And why I might quietly slip away from a conversation just when you start thinking that everything is back to normal.

It's not you. I promise.

It's me.

And I know that's the world's most unhelpful cliche, but it's the total and honest truth.

I want you to know that I'm not sitting around feeling sorry for myself. I'm not sinking into a deep depression or wallowing in a pool of self-pity and resentment. And even though I might break down in uncontrollable fits of private sobs more often than I want to admit these days, I really will be okay. And I'm getting better, but it will take some time to replenish my natural well.

As you know, I'm a certified optimist. I can find the good in any situation, the positive spin on even the most negative circumstances. And even though circumstances have been HARD for the past eight months, I can see so many wonderful blessings that have come from our struggles. And truly, even though I don't know how I have the strength to get out of bed some days, the Lord has blessed me with the strength to keep putting one foot in front of another, and we've found a way to do all of the truly essential things.

But here's the thing: Things are more difficult right now than they've ever been. And although I can still look at each and every trial and find the good hidden there, I'm exhausted. I simply don't have the energy to project that positive spin for an audience.

I'm not sure when we'll be able to go home again. Work has come to a screeching halt on our house, as we wait for reports from the structural engineer (so that the rebuild can be done safely and securely, and we don't accidentally end up with nothing more than a pile of rubbish where our home used to be). We have no more money to pay for work to continue. The funds we've raised, the loan we were able to acquire, and the small amount we had in our savings have all gone to pay for the mold removal. We're hoping to be able to get a new loan to refinance our house and be able to pay for the rebuilding, but the bank can't process the paperwork until they have the report, and we won't know if we even qualify for the loan until they process that paperwork.

And yes, I know that I have been so richly blessed in so many ways. I'm still beyond overwhelmed by the generosity you showed in our gofundme campaign. And yes, I have faith that somehow, in some way, things will work out.

I don't know how.

And to be honest, I'm terrified. And feeling more than a little bit lost. But the natural optimist in me keeps pointing out the blessings, and that keeps me from collapsing under the weight of it all.

The thing is, my little cup of gratitude, overflowing as it may be, isn't big enough to fill my well right now. And I just don't have enough optimism to share.

So when you ask me for an update on my house, and the only news I've had to report for months is that work has stopped and I don't know when or if we'll be able to afford the next step ... Or when you ask me if I'm going to make cookies for everyone in the neighborhood this year (as I used to do every year at Christmas), just hours after I was crying in the grocery store because I wasn't sure I'd have enough money to feed my family that week ... Or when you invite my children to join you for an afternoon of fun and it's only $10 per person, but that's $40 more than I have in the budget ...

Yes, I will still see the blessings there. I will still see the silver linings in every cloud and the rainbows shining after every storm.

I will be excruciatingly grateful for the most amazing contractors in the world, who have gone out of their way to personally let me know that I'm not alone, and that they will do everything in their power to make sure we WILL find a way to rebuild our home.

I will blink back a few tears of joy over the fact that everything on my grocery list was on sale and each item carried extra gas reward bonus points

 enough to allow me to fill my tank for only fourteen cents per gallon.

I will thank the Lord that you love my children enough to want to include them in the fun times, and that you recognize how desperately we need some fun right now.

But I don't always have the energy to keep smiling.

I don't even have the strength to explain to you that you didn't make me cry, and that I didn't mean to burst into a sobbing mess just because you showed me the beautiful kitchen you just finished remodeling.

And I'm struggling so hard just to keep my own head above water that even though I see you struggling too, and I desperately want to lift you, I know that we'll both go under if you're relying on me.

But I'm not really absent. I'm still here, quietly cheering for you on the sidelines. I pray for you. I think  of you.

And little by little, I'm filling my well. One tiny drop at a time. Until someday soon, I hope, I'll be ready to step out of the shadows and reflect the sunshine I see in our lives every single day.

Please be patient with me until then.

And please know that I love you.

*hugs*

Numbers Don't Matter. YOU Matter.

I have been so worried and caught up in the numbers game lately. I absolutely cringe every time someone asks me "How is your book doing? How many copies have you sold so far?" (Seriously, guys. Don't ask things like this. I don't ask you how much money you made with your last paycheck.) Every time someone asks this question, I feel like I need to defend my worth. Like I'm only valuable if I'm doing BETTER than everyone else. (By the way, I'm fine. I've sold more copies of my book than some have and less than others. Just like every other author on the planet, throughout the entire history of books.)

This weekend, I hit a severe low, however, as I started letting the numbers game get to me. What if "fine" isn't good enough? What if people stop seeing me as worthwhile because I'm not THE BEST? And how do I even measure that status? I've had overwhelmingly-positive reviews, and I get emails and private messages regularly from readers who say they were touched by my book. Is that more or less important than hitting #1 on a Bestseller List?

And then, Saturday night, I went to the General Women's Broadcast of The Church of Jesus Christ of Latter Day Saints. This talk, by President Dieter F. Uchtdorf (2nd counselor in the first presidency of the church) was exactly what I needed to hear:

Post by LDS Videos.

The entire talk is worth watching. (You can find the full talk here.) I especially needed to hear the part (right before the clip shown above) where he said, "God knows of your successes. Though they may seem small to you." - Because I matter to Him. Whether I've sold 1 book or 1 million, that's the only measurement that really matters. 

 And you matter too. 

Don't ever let anyone tell you otherwise!

Overcoming Fear and Learning to Speak Up

At the Last Supper, Jesus taught his disciples, to prepare them for his imminent sacrifice. And he told Peter “I have prayed for thee, that thy faith fail not: and when thou art converted, strengthen thy brethren” (Luke 22:32).

Peter was offended. He insisted that his faith was strong enough that he’d happily follow Christ anywhere, even to the grave. Yet, not many hours later, when faced with accusations from the murderous mob, Peter denied any association with Jesus Christ. His faith wasn’t as strong as he thought it was, but this experience gave him the push he needed to allow his faith to grow, until he was ready to live as an example of Christ.

As a member of The Church of Jesus Christ of Latter Day Saints, I’ve been taught over and over again to share the gospel of Jesus Christ with friends and family members who haven’t yet heard the good news, or those who may have wandered away from the truth. In fact, David O. McKay, the 9^th president of the church, declared “Every member a missionary!” Nearly every week at church, I’ve heard my teachers, leaders and friends talk about the importance of missionary work. And over the course of a lifetime, that’s a lot of weeks!

To be honest, for many years I was more than a little bit uncomfortable with this charge.

Did I believe wholeheartedly that the Gospel of Jesus Christ would bring peace and joy to the hearts of all who embrace His teachings? 

Yes, without a doubt.

Did I want my friends and family members to be happy? 

Of course I did.

So I should be out in the world, preaching the Gospel to everyone who would listen, calling friends and family members to repentance, right? 

Well… :-/

When Jesus Christ was on the earth, He taught His followers that unconditional love was always the answer. He invited all to come follow him, but He didn’t pressure anyone or condemn those that didn’t immediately jump at His invitation. As a follower of Christ, I wanted to emulate his example of unconditional love for everyone, and I took the charge, found in Matthew 7:1 to “Judge not, that ye be not judged” very seriously.

Here is where my problem with the “every member a missionary” charge arose. If I pointed out the truths my friends and family were missing in their lives, wouldn’t that mean I was judging them? How could I reconcile the need to share the Gospel with the charge to love unconditionally, without judging?

I told myself that I didn’t have to “be a missionary,” because loving others was the most important thing, and if my friends were ready to hear the Gospel, they’d remember my example and seek Him without any prodding from me.

But then, several years ago, I attended a scrapbooking party with a friend. As I talked and laughed with the other ladies at the party, one of the ladies I didn’t yet know asked a question about what Mormons believe.

I honestly don’t remember what her question was, but I remember the uncomfortable silence that filled the room, as all of the Mormons in the group waited for someone else, maybe someone who knew her better, or someone who had served a mission and was more qualified, to answer her question. We’d been having so much fun, and no one wanted to turn the focus to our potential differences. We didn’t want to risk alienating this woman, if she didn’t understand our perspective or didn’t agree with the doctrine.

Finally, I found the courage to speak up and answer her question. That led to more questions, and we talked until well-past two in the morning. That first conversation led to many others. And soon, Tracy was one of my closest friends.

A few years later, when both of us had moved from the military base where we initially met, Tracy and I met up again at a conference in Salt Lake City, Utah. The location of the conference naturally led to more “What do Mormons believe?” conversations, and when Tracy introduced me to her group of friends, she informed them, “Veronica isn’t afraid to answer your questions, so feel free to ask her anything you need to know about Mormons.”

And she was right. I wasn’t afraid anymore. Because the more I learned about the love Jesus has for me, the more I wanted everyone around me to feel that same love and peace.

Like Peter, I had to be truly converted before I understood how to strengthen those around me.

The thought of “being a missionary” still terrifies me. Yet, when a conversation with a friend reveals that they’re struggling with an issue for which I’ve found an answer in the Gospel of Jesus Christ, it’s easy for me to assure them that the answer is there for them as well. When the Lord advised Peter to strengthen those around him “when thou art converted,” He wasn’t questioning Peter’s loyalty or faith. He was reminding Peter that it’s easy to share the love of Christ with others, when we feel that love within ourselves.

I’m still painfully shy in large groups, and I’m not likely to be the one to go knocking on doors, offering to share God’s message with total strangers, but I’m no longer afraid to share my faith with others. (Seriously. If you have questions about Mormons, please ask me. I’d love to answer your questions for you!) And when a Gospel principle that I’ve been struggling with clicks in my mind and I finally understand, I’m excited to tell my friends about the new and exciting truth I’ve discovered. Because I love them and want them to feel the joy and peace I feel.

That is what “being a missionary” is all about.

Broken Things

This week has been a really difficult one for me. Without going into a lot of personal details, suffice it to say that the plans I've made for myself keep going awry. And I've been very frustrated with the way my plans keep breaking to bits. I keep asking myself, "Why can't anything go right???"

But on Thursday night, we had our monthly Relief Society activity (Relief Society is the women's organization for the Church of Jesus Christ of Latter Day Saints). The theme of the evening was parenting, and one of the speakers (my friend Ana's mom) talked about loving our children, even when they stray into destructive paths. As she quoted a talk from Jeffrey R. Holland (one of the General Authorities of the Church of Jesus Christ of Latter Day Saints), I couldn't help but think of this song by Kenneth Cope:

Finding Joy Through our Trials

This past Sunday, our lesson at church was all about learning and growing from and finding the joy in the trials we face. And I had so many thoughts and feelings about the topic that I spent much of the afternoon trying to figure out how to coherently express the things I'd learned without yammering on for a million pages... So, as often happens, I didn't post on Sunday evening. I told myself instead that I'd do it in the morning.

But yesterday, I got all caught up in the dual excitement of my birthday and the start of The Writer's Voice agent round (go Team Cupid!!), and although I thought about my planned blog post throughout the day, I didn't pull up my computer to start writing.

I let myself imagine, for a bit, that my ultimate birthday present this year will be an earth-shattering clamor of agent attention for my manuscript. And I thought about how I've come so far with my writing since my last birthday, how the rejections and harsh critiques, coupled with amazing encouragement from trusted writers and publishing professionals, have shaped me into a better writer than I thought I could be.

I thought about how, in making my manuscript the best it could be to prepare for this contest, I had to give my characters some incredibly difficult challenges to overcome. I had to let them suffer, because a character who never has to work through tough times won't ever know what she is truly capable of. She won't know who she can lean on for support if she never has trouble standing on her own. She won't discover hidden talents and new ways to accomplish things if she never has to fall back on plan B (or C or D). And I thought about how these truths in the fictional world of my manuscript translate so exactly into real life.

And I planned to write yet another post all about how the trials and difficulties I've faced in my lifetime have ultimately been blessings. (I've talked about this concept here and here and here and here... and throughout my blog posts - but what do you expect from a blog titled "Love & Life & Learning?)

Then, tornadoes hit Oklahoma, devastating whole communities, and I wondered if it would be appropriate to post a message all about how our trials are for our good, and even when we feel like we've lost everything, we can trust the Lord to bring us through to something better. I wondered if my message of hope and encouragement would be seen as simplistic or preachy, in light of the current situation. But ultimately, I decided that, perhaps, there was a reason my thoughts had been dwelling on finding joy through sorrows and leaning on each other in times of pain. Maybe someone needed to hear the message.

And even if I'm the only one who really needed the message today, it's worth remembering. Because tragedies like this have a way of bringing people together. And we find ways to help each other through. And miracles do happen. We're not alone.

Happy Mother's Day! (Just one day late)

I am so grateful for all of the Mothers in my life! I didn't write a post yesterday, because I spent the day being loved by my children and calling many of these mothers (mom, mother-in-law, grandmothers, sisters). But this morning, I saw this video, that perfectly sums up my feelings, so I had to share.

Love and hugs to you all!

Lessons Learned from my Brain Tumor, part 4

If you need to catch up, you can read part One, Two and Three of the story by clicking the links.

In the fall of 2002, when I finished my six weeks of daily radiation treatments, I thought my brain tumor story was over. I had just completed the most difficult time of my life, and except for the little bit of radiation sickness that came on at the tail end of the treatments and the slight hair loss I experienced, I was feeling better than ever before. For the first time ever, I experienced hours, and even whole days when I didn’t have a migraine. And I discovered that there are, in fact, headaches for which a Tylenol will actually work! After all these years, thinking that Tylenol only worked because of the placebo effect, I realized that even the “slight headaches” I’d been experiencing for years were migraines strong enough to make grown men cry. It was what I’d gotten used to, and I didn’t realize how bad the pain was until it wasn’t my constant companion anymore.

My doctors were pleasantly surprised to find that the radiation didn’t simply stop the tumor from getting bigger. It actually shrunk in size! I was better, and this difficult journey wasn’t even as hard as I’d expected it to be!

Sure, I’d have to go in for follow-ups ever few months, so the doctors could monitor my symptoms and scan my brain and make sure I was still doing fine, but that was nothing. I no longer had dizzy spells and headaches, nausea and vision problems to deal with. And I knew I’d only continue to get better from this point on.

Obviously.

Because my tumor was the benign kind. Not cancer. So once it started behaving, I wouldn’t have to worry about it anymore. Right?

Sigh. Wouldn’t it be nice if life worked out that way?

 

In July of 2004, when our fourth child was only a few months old, my husband was sent to Korea for a year with the Air Force, leaving us behind in California. By this time, some of my symptoms had returned, but the tumor was still holding steady on the scans, so I wasn’t worried. Phil (my husband) and my doctors, however, were concerned. Sure, I was managing my symptoms just fine, with Phil’s help and support, but I had a brand-new baby and three other children (ages 2, 4 and 6). What if I started having blackouts again? What if the tumor started growing? What if I needed help and I was all alone?

My doctors, my husband, and several of his commanding officers wrote letters to request that his orders be cancelled. He was needed at home, and I shouldn’t be left alone, they all argued. Especially not for a full year. And everyone, all the way up to the group commander, was certain that the Air Force would see the error of their ways and tell Phil to stay home.

Until two weeks before his report date, when the request was denied.

“If your wife needs care in your absence, you should hire a live-in nurse to care for her,” the email said. And Phil went to live in Korea for a year, while I stayed back in California with four small children and a calendar full of doctor’s appointments.

And it was difficult, but I had friends to help me through, and I made it through the year with only a few scary moments. I discovered that I was still strong enough to deal with this brain tumor, even when my husband could only support me through phone calls and video chats.

Phil returned from Korea in July of 2005, and I heaved a giant sigh of relief. I made it through a year without him, and nothing major happened. My tumor was still behaving itself. Life was good. I turned the kids over to Phil for a few days and went to spend time with some friends. And then we settled into a peaceful, low-stress routine, happy in the knowledge that we were strong enough to make it through anything. And I wasn’t going to self-destruct.

 

Then, in early October 2006, I had a massive dizzy spell while grocery shopping. And then the blackouts started again. And the breathing troubles. And the vision problems.

And then, the MRI showed that the tumor was growing again.

My primary care doctor (Dr. O’Donnell at UC Davis – I was no longer even going to the military clinic for routine illnesses by this time) suggested that we consider the possibility of surgery.

But wait! Didn’t they tell me, back in 2002, when they discovered this thing, that they didn’t even want to biopsy it because it was too risky? What would happen to me if they cut me open and started poking around in there? Sure, the symptoms were horrible, but what if the surgery made things worse?

Dr. O’Donnell assured me that it was my best option at this point, and he referred me to Dr. Boggan.

And I already knew who Dr. Boggan was.

Way back in my first week of radiation treatments, I had met another brain tumor patient one day, while waiting in the lab to have my blood drawn. We started chatting, because that’s what you do, and this man asked if I was planning for surgery sometime in the future. I told him no, of course not. My tumor couldn’t be operated on. It was in the brain stem, and all of the doctors agreed that the unique placement of the tumor made the idea of surgery much too risky. Turns out, his tumor was in the same spot on the brain stem (what are the odds??), and most doctors didn’t want to risk surgery, but when the tumor started growing too big to deal with in any other way, they had referred him to Dr. Boggan. “Ask about him, if you ever have to consider surgery,” this guy told me. “He’s really good. I came through the surgery perfectly fine. I only lost feeling in one hand.”

Way back then, I had listened to this other patient with growing horror. The dangers of surgery were 100% confirmed. I’d never even consider surgery. But now, four years later, I realized that surgery was my only option. And once again, the Lord had placed me in the care of the best doctor available for this type of surgery. After lots of fasting and prayer, and a few Priesthood blessings, we decided to move forward with the surgery. And I wasn’t scared. Much.

I knew that everything would be all right. I was certain that I would come through the surgery with no problems. I still had work to do, after all. It wasn’t my time. And even when one of my best friends (who was totally convinced that I was going to die on the operating table) insisted that I should write goodbye letters to my children before going in for surgery, “just in case,” I wasn’t scared. After all, I went through radiation treatments without substantial hair loss or radiation sickness, my tumor shrunk with the radiation, when the most they were hoping for was to slow the growth, and even with my renewed symptoms, I still felt better than I did before they found the tumor back in 2002. Surgery was going to be a piece of cake.

And it was. Kind of.

When Dr. Boggan got into my head, he discovered that my tumor was actually much bigger than it had appeared on the scans. In fact, the growth that they had been monitoring on the scans wasn’t even the actual tumor. It was a calcification that had grown in the center of the tumor. My tumor was a thin membrane that had grown over and around the brain, molding itself to actual brain tissue and becoming virtually invisible to scans. My two-hour surgery turned into a nine-hour ordeal, and by the time they had to stop, they were only able to get 60% of the tumor.

But they got 60% of it! And I was alive. And what more can you ask for, really?

Yes, there were complications. I woke from the surgery and discovered that I couldn’t feel my left arm or the right side of my body from the waist down. I still had total control over my arm and leg, but I couldn’t feel them at all. Over the next few weeks, I had to re-learn how to walk and how to carry things without dropping them. I discovered that, depending on whether my bladder was leaning more toward the left or the right side of my body, I couldn’t always tell if it was full or not. Weeks later, my throat was still scratchy from the breathing tube, and the doctor couldn’t guarantee that I’d ever get my beautiful singing voice back again. And the steroids I had to take made me jittery and restless… and I gained over 100 pounds in less than a month.

I felt like a chubby toddler, and I was constantly frustrated over the things that I should be able to do but couldn’t. I couldn’t even dress myself without help!

And so we come to lesson number five: Those little things we take for granted every day? Walking. Talking. Feeding yourself. Reading a book. These are blessings! We have so much to be grateful for, and it’s so true that you don’t really know what you have until it’s gone. But these days, I try to be a lot more aware of those tiny miracles.


Read part five of my Brain Tumor Story (coming 3/31/13)

or

Catch up on the story by reading Part One, Part Two, and Part Three.

Lessons from My Brain Tumor, part 3

If you missed Part 1 or Part 2 of my brain tumor story, you might want to click the links to catch up before reading this part.

In my initial visit with the neurologist (right after they found my tumor), she explained that because of its location in the brain stem, the least risky course of treatment for my tumor was radiation. Even a biopsy could be troublesome, since there isn’t much wiggle room in the brain stem, and a wrong move with that biopsy needle could cause more problems than it was worth.

Because we’re in the military, I didn’t get to choose my treatment center, unless I wanted to pay for it all on my own (and yeah, there’s no way you can pay for something like this without insurance)… The two available options for our area were Travis AFB and the UC Davis Cancer Center in Sacramento, California. Travis AFB would have been Tricare’s first choice for treatment (Tricare is the military insurance plan), even though it was a farther drive for us, because it was a military facility (thus, it was less expensive for the military to pay for), but Travis AFB had a full patient load, and they couldn’t fit me in. So I was referred to UC Davis. And the UC Davis Cancer Center just happens to be one of the top facilities in the country for treating brain tumors (while there, I met people who had come from all over for treatment).

You might call it luck or coincidence. I firmly believe that it was a case of the Lord looking out for me. I know that we weren’t just coincidentally in the right place at the right time for me to get the best treatment possible. We were there by Divine design. Heck, when we got the orders to take us to Beale AFB, everyone in my husband’s chain of command was certain that the orders were a mistake. “You’re a Korean linguist, and they don’t have a mission at Beale for Korean linguists. You’re not supposed to be going there!” And from a military standpoint, they were 100% right. There was no reason for my husband to be at Beale AFB as a Korean linguist. But it was the best place in the world for us to be stationed when my tumor was discovered.

And so I began radiation treatments at the UC Davis Cancer Center.

The first step in the treatment was to create a mask, custom molded to my head, which would hold my head in the exact same position every single day, so they could guarantee that they were shooting the pinpoint radiation into the same place every time.

The mask was in two pieces, molded to fit my head completely.

Front part of the mask - the mesh on the nose piece broke in our recent move.
Imagine it with the mesh filling in that hole too.

 

I had to lie perfectly still, while they pressed a warm, pliable, plastic mesh around my head. And I had to stay perfectly still while the plastic hardened into place. Because the mask had to be perfect. To ensure that the treatments would be targeted properly, they couldn’t allow for even a millimeter of wiggle room.

Did I mention that I’m claustrophobic?

I got through the agonizing process with my husband and my mother by my sides, each holding one of my hands and talking me through what seemed like hours (but was probably closer to five minutes) while I waited for the plastic to harden and fought the rising panic attack.

But that was the easy part.

When I started my radiation treatments the next Monday, no one could be in the room with me (because of the high levels of radiation being shot through the room). The radiation technicians would take me into the room, where they would fit the mask to my face and bolt it to the table. Then, they would go into the next room, where they could watch me through a window and talk to me over the speakers while the machine rotated around my head, shooting pinpoints of radiation into the marked coordinates for fifteen minutes.

Going into the radiation treatment room. Notice the big, thick, heavy door that kept radiation from leaking out?

About every third day, by the time the technicians had the mask bolted to the table, I was in a full-blown panic attack, and they had to rush back in to take the mask off, so I could sit up and breathe and calm myself down before we could proceed. And not once did they complain or grumble or look down on me for being a big baby. The doctors, technicians and nurses at the UC Davis Cancer Center were the most amazing group of medical professionals I’ve ever had the pleasure of dealing with. I felt like we were a team, working together for a common goal.

Me with the doctor and one of the lab techs (and the machine) on my last day of radiation treatments!
Somewhere, I have a picture of me bolted to the table with the mask, but I couldn't find it today.

And as scary as the treatments were, I knew that it was a necessary part of my path to recovery. My mom and husband couldn’t stand by my sides to hold my hands through the radiation treatments, like they did during the creation of the mask, but I never felt like I was alone.

Because I wasn’t.

My grandfather, who died when I was in high school, stood by my side every single day as I was trapped on that table. I could feel his presence, and I could see him standing there, close enough that I could reach out and take his hand if I got too scared. But just knowing that he was there for me made it all okay. And every time I felt like I couldn’t do it anymore, every time that I started to panic in the middle of the treatment, Grandpa would take a step closer and tell me that everything was all right. And it was.

That’s the fourth lesson I learned from this brain tumor: I’m never alone! The Lord loves me enough to put me in the right place at the right time to fight the scariest ordeal I’ll ever undergo. And I have family and friends, both on Earth and in Heaven, who will always be there to love and support me when I don’t have enough strength to get through on my own. Life is not a solitary journey. It was never meant to be. And we’re stronger together than we could ever hope to be alone.


Read part four of my Brain Tumor Story

or

Catch up on the story by reading Part One and Part Two.

Becoming Perfect, One Day at a Time

This morning, in my daily devotional study, I came across the following from Lorenzo Snow (President of the Church of Jesus Christ of Latter Day Saints - the Mormon Church - from 1898 to 1901):

Do not expect to become perfect at once. If you do, you will be disappointed. Be better today than you were yesterday, and be better tomorrow than you are today. The temptations that perhaps partially overcome us today, let them not overcome us so far tomorrow. Thus continue to be a little better day by day; and do not let your life wear away without accomplishing good to others as well as to ourselves.

Each last day or each last week should be the best that we have ever experienced, that is, we should advance ourselves a little every day, in knowledge and wisdom, and in the ability to accomplish good.
 

 He didn't say that we shouldn't expect perfection. In fact, he encourages each of us to eventually attain perfection in our lives by striving each day to be a little bit more perfect than we were yesterday.

This advice is going into my permanent file of encouragement. Because it applies to every aspect of life.

Yes, I will make mistakes as I strive to be the best mom ever. There may be times when, tired and discouraged, I will lose my temper and yell, and then send the kids to their rooms, instead of taking the time to calmly discuss the issues we're struggling with. Or I may, from time to time, serve cold cereal for dinner instead of a 4-course gourmet meal. But these little setbacks don't mean I've killed my chances for ever being a good mom. (Heck, sometimes we need a cold cereal night more than we need a gourmet dinner!)

Yes, I will make mistakes with my writing. I might write a truly terrible first draft of a story, full of two-dimensional characters and totally lacking depth and direction. But I can revise, rework and edit that story until it shines. I might accidentally send a query letter for my story about a little clown who struggles with the fact that he doesn't have over-sized feet like the other clowns to an agent who has a terrible fear of clowns... and then discover a tweet from that same agent where she admits her phobia and advises that all clown stories should be destroyed immediately. But I can research other agents, looking for one who loves clowns before I send other queries. (Note: this is a hypothetical situation. I don't have such a story... although now I want to write it... and if I do, I promise not to send it to any agents or editors who have openly admitted their Coulrophobia.)

Yes, I will make mistakes as a wife, a friend, a daughter, a sister, and a Christian. There will be moments when I am far from perfect. But that's the great thing about this life. We have second chances. When we make mistakes, we can pick ourselves up, dust ourselves off and fix them. We can move forward each day, working to make ourselves today just a little bit better than we were yesterday.

And we will have moments (many, many moments) when we are perfect. That cake recipe you've been struggling with for years? Finally came out perfectly... That complicated piano piece you've been practicing? You didn't miss a single note this time... That phone call you made to a friend, just because you were thinking of her? It was exactly what she needed at a particularly low point in her life. - We may not see or recognize all of our perfect moments, and we may stumble and fall more than once in between those moments. But that's okay.

Because the Lord only asked us to "Be ye therefore perfect," (Matthew 5:48). He didn't say "and I expect you to do it all today."

Sparrows, Traps and the Power of Prayer

This morning, in church, one of the speakers talked about the power of prayer in our lives. She spoke of the miracles that prayer can bring into our lives, and the strength we can achieve through it. I found my attention starting to wander a bit ("I've heard all this before. I could teach this lesson, if I wanted to.") until she mentioned a story from a talk given by President Boyd K. Packer (President of the Quorum of the 12 Apostles in The Church of Jesus Christ of Latter Day Saints) in a general conference talk in October 2009.

President Packer said that the Lord expects us to not only pray for His help and guidance in our troubles, but He expects us to do all that we can for ourselves as well. He said:

That principle is illustrated by the story of a little girl. She was upset with her brother, who built a trap to catch sparrows.

Unable to get help, she said to herself, “Well, I’ll pray about it.”

After her prayer, the little girl told her mother, “I know he is not going to catch any sparrows in his trap because I prayed about it. I’m positive he won’t catch any sparrows!”

Her mother said, “How can you be so sure?”

She said, “After I prayed about it, I went out and kicked that old trap all to pieces!”
 

 This little girl didn't doubt that the Lord would hear her prayers and help her with the problem she faced. After all, didn't Jesus Christ say that Heavenly Father notices when even a tiny sparrow falls to the ground? (Matthew 10:29) Of course he would help her save the sparrows. But the girl's faith didn't end with the plea to God on her knees. With the courage she found in prayer, she got up and did something about that dreadful trap!

As I listened to this story, I thought about my own struggles in the past few years, as I've worked to become "a real writer" - plugging away, day after day, on my manuscripts... revising and polishing until they shine... dreaming of the day when I would see my name on the cover of a real book in a real bookstore. Like the little girl in the story, I've believed that with the Lord's help, nothing is impossible, and I've prayed with faith, trusting that the Lord would guide my path properly. Unfortunately, I haven't fully followed this wise little girl's example.

Oh, I know that nothing of true value comes without effort. And believe me, I've put in lots of effort. Countless hours reading, writing, revising, taking classes, exchanging manuscripts with published authors and editors for critique, more revisions, more classes, more writing and more critiques... I've done just about everything possible to ensure my success as "a real writer."

Except one thing.

I've let fear of rejection hold me back from submitting my work to agents and editors. In many of the blog posts, webinars, conferences and classes I've studied, I've heard that usually, the first novel you write won't be good enough for publication. I've heard more than one industry professional advise that you should write that first book, revise it, learn from it, and then put it away and write something new and better. And so I put my first novel away. Because "everyone" said it probably wouldn't ever be good enough.

I wrote another manuscript. And I put it away. Then I wrote another. And I put it away. Then, I rewrote the first story from a different perspective, and it was a completely different book but I told myself I had to put it away again, because it was technically my "first manuscript" and therefore it couldn't be good enough to get published. And so I wrote another story instead. And another...

Somewhere along the way, I guess I forgot that I was supposed to have "kicked that old trap [fear] to pieces!" And it doesn't matter that I've built grand birdhouses to shelter the sparrows [in this analogy, the sparrows are my unpublished manuscripts] or prayed for the Lord to help them fly... As long as I allow that trap to remain, the little birds will never be free.

So this week, I'm working on "kicking that old trap to pieces." I'm determined to swallow my fears, to send out query letters and to keep moving forward, even when I face let-downs and set-backs. Because I know that the Lord is always there to help me and to give me the strength I need, but He won't do it all for me. He expects me to do all I can too.

What about you? What "traps" are you facing in your life? What steps do you need to take to overcome them? Do you have the courage to "kick that old trap all to pieces?"

I Am So Grateful

This weekend, I had the privilege to watch the semi-annual general conference for The Church of Jesus Christ of Latter Day Saints (the Mormon church).

This is one of my favorite times of year - the opportunity to listen to the leaders of the church as they give us guidance and counsel as we strive to more perfectly follow the teachings of the Lord, Jesus Christ. I've found that no matter what trials and troubles I'm facing in my personal life, I will find the answers that I need in the addresses given during this conference. This weekend was no exception.

Lately, I've been overwhelmed and run-down as I've tried to settle into my new home. I've been sorely missing the friends I left behind in Maryland, and I've been so busy with the getting-settled runaround that I haven't yet established a circle of close friends here. So I've been feeling lost, lonely and somewhat down-in-the-dumps for the past month or two. It was with this depressed spirit that I tuned in to hear the words of the Prophet this weekend.

One of the biggest themes that ran throughout many of the talks and addresses given this weekend was this: Heavenly Father knows and loves you. He sees what you are going through, and He does not hide. He is directing your path; He will answer your prayers; He has a plan for you - even if it doesn't feel like He's really there.

President Thomas S. Monson suggested in his address Sunday morning that we take time to focus on the daily blessings we see in our lives. Make a list of all that you have been given, even the small, almost insignificant blessings, he advised. When we focus on the positive, instead of dwelling on the negative, our trials and troubles become much easier to endure. I realized, as I listened to him speak, that I've gotten away from that practice here on my blog, which I started as a way to keep track of those small blessings I so easily overlook. - So here I go, back to basics, with my list of the trials (and the "small" blessings that have come from them) that I'm grateful for today:

1. I'm glad I wasn't able to pass the inspections to allow me to rent out my home back in Maryland before I left. The tighter finances have made me once again look for creative, inexpensive solutions to my needs... and I've discovered once more that I can do a lot more than I thought I was capable of! - Also, my empty house has become a blessing for a friend who needed a place to stay for a few months while she finishes her college degree.

2. I'm grateful that the public schools here aren't quite as advanced as those we left behind. The necessary shuffling of my daughter between the high school and the middle school each day has given me a schedule that makes it impossible to search for a part-time job (at least until the end of the school year). Of course, my initial feeling about this situation was one of absolute terror, as I wondered how on earth we could possibly afford to pay for two households (remember? the house in MD isn't bringing in rent right now) if I couldn't go out and get a "real" job... But because my daily schedule is full-to-the-brim with shuffling kids around to fill their school needs, I suddenly have built-in one-on-one time with each of my four children! - And as an added bonus, I have about two hours each day all to myself when there isn't enough time to go run errands or tackle some of the bigger projects on my to-do list before the first of my children arrive home from school... and this has become my scheduled writing time each day. I've accomplished more with my writing in the past two months than I thought possible!

I have so many things to be grateful for... so many troubles-turned-blessings that I couldn't possibly list them all today. But I resolve to be better at looking for the good things in life as I face the difficult opportunities for blessings that crop up from day to day!

What about you? What troubles are you grateful for?