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!

Super-Secret Recipe Testers Needed!

It's Thursday again, which usually means a new and delicious recipe from the kitchen of yours truly...

But I'm running a little behind these days.

The amazing new "miracle drug" that I've been taking (okay, maybe it's not technically classified as a miracle drug, but the effects have been miraculous for me, so I choose to think of it that way) has had an interesting side-effect on me. Because I'm no longer in constant pain, I've been able to sleep when I'm tired. No more super-late nights followed by way-too-early mornings for me! This is wonderful!! Except, I'm discovering that I can't do as much in 15 hours of wakefulness as I used to accomplish in 20-22 hours each day. Until I get into a new rhythm, I'll have to slow down a bit.

This is not to say that I haven't been working. I started a brand-new, shiny writing project (another YA Contemporary novel), and I'm REALLY excited about the story. I can't wait to be able to share it with you!! It's still in the early stages (just started writing the first draft late last week), so I don't want to say too much yet, but I can tell you that the main character dreams of being a famous chef. Which means LOTS of fun experiments in the Bartles kitchen, as I imagine the recipes that my main character would whip up for the various scenes of this new novel. (Yay!!) Unfortunately, because the recipes are intended to become a part of this shiny, new manuscript, I can't post them online for you (Sorry!), and I don't have enough hours in my day to come up with new recipes for the blog AND new recipes for the book every week.

Don't worry! I'll still be posting recipes full of yummy goodness. Just not quite as often. For the next few months, I'll be posting recipes on the first and third Thursdays of each month (and book reviews on the second and fourth Tuesdays). I'm hoping to be back on a more regular schedule by the end of the summer, so the plan right now is to re-evaluate in September, at which time I may return to my posting-three-times-a-week schedule.

In the meantime, I realized that my recipe index is starting to get out-of-date. So I'll be spending the next week or so updating the recipe posts with printable versions of the recipes and reorganizing my recipe index page to make it easier for you to find the recipes you're searching for. (I'm in the process of creating printable recipe pages for each of the recipes I've posted so far, and I hope to have all of those up by Monday. Please be patient with me!)

And I will need a few volunteers to test out the super-secret recipes I'm developing for my manuscript in the Bartles test kitchen, so if you're interested in helping me out, leave me a comment and let me know! Please include the following information in your comment:
  * Your cooking skill level (I'll likely need some more experienced chefs as well as a few novices)
  * What kind of recipes you're most interested in testing (desserts? entrees? side dishes? snacks?)
  * Any special dietary needs that would limit the recipes you could test (allergies?  vegan? vegetarian? gluten-free?)
  * Make sure I know how to contact you! (I probably won't be able to send every recipe to every person who offers to help, but I can't send you any recipes at all if I don't have a way to contact you privately. If you don't want to post your email address on the comments, feel free to send me an email via my handy "contact me" form on my About Me page.)

Lessons Learned from My Brain Tumor: Update!

I know I said that last week’s installment was the end of my brain tumor story (If you missed reading the story, you can catch up now! The full story is broken into several parts: 1 / 2 / 3 / 4 / 5), but I met with my new neurosurgeon this week, and I felt I had to give a quick update…

For about a week prior to my appointment, I practiced my approach. I imagined the scornful way I would probably be treated, and I rehearsed the way I would explain my symptoms without resorting to tears. I told myself that, if I could get through this appointment, I would be able to avoid any further follow-ups for the next few years… or however long it would be until I had to go through the military medical clearance process for our next move. And, I decided, if this doctor insisted that I was imagining things, I would demand that he put it in writing, so I could make the military clear my medical restrictions file. If I was only “imagining” my tumor, after all, I shouldn’t be required to keep going in for follow-ups for it, right? And it shouldn’t prevent us from any overseas assignments, either. (I’d love to be stationed in Hawaii or Europe… but they won’t allow us to have an overseas assignment, as long as I still have a brain tumor.)

So on Thursday afternoon, I went in to see Dr. Yonas, the head of the neurosurgery department at UNM. As I sat in the waiting room, I pulled out the manuscript I’m reading for one of my critique partners and forced myself to relax. There was no point in getting all worked up over this. One way or another, this was going to be the end of it. And so I didn’t care what he said to me. I’d already decided I was done. And so I told myself that the butterflies working themselves up into a frenzy in my stomach were irrelevant.

But I was totally lying to myself, and I knew it.

The nurse brought me back to the examination room and took my vital statistics (no surprise, my blood pressure was a little high), and then she left me to wait for the doctor…

After an eternity, a doctor came in to speak with me. It wasn’t Dr. Yonas, but a resident whose name I didn’t quite catch. And he looked almost as nervous as I was.

Great, they didn’t want to deal with me at all, so they’re pawning me off on some incompetent newbie, who probably hasn’t even looked at my file and won’t listen to a word I say.

I took a deep breath and put away my e-reader.

“I have been going through your file,” he said, “but it’s so thick that I’m having trouble pulling out all of the relevant information. I thought you’d probably do a better job of summarizing it all for me. Would you mind telling me about your tumor? When and how did they discover it?”

When I nodded, he lost his nervous look and pulled out a piece of paper and a pen and sat down to listen to my story. A few times, as I told him the same story I’ve been telling you, he stopped me to ask for clarification and further detail on one point or another, prodding me for dates to fill in the timeline and specific symptoms I experienced. He didn’t contradict me or roll his eyes. He just listened, and asked questions, and took notes. Then, he ran me through the normal neurologist physical exam stuff… testing my reflexes, checking my balance, having me follow his finger with my eyes, watching me walk across the room and back, poking and pinching my arms and legs to see if I could feel it equally on both sides. (I couldn’t feel the pressure equally, by the way. – I hadn’t realized how much my left hand and right leg were still numb until this appointment. I guess I’ve gotten so used to dealing with the loss-of-sensation that I didn’t even know how much I’d adapted.)

After I finished telling my story, and he finished the physical exam, the doctor took his (now completely full) piece of paper and left the room. (He explained that they needed to finish looking over the images from my MRI scans, to get a clear picture of what we were dealing with, and he would be back soon.)

I spent the next several minutes trying to concentrate on the manuscript I was reading instead of worrying about what he might be saying about me.

A million years (or at least 10 minutes) later, this doctor and an older man, who introduced himself as Dr. Yonas, came back into the room. Dr. Yonas asked me a few more questions to clarify the tumor timeline and the symptoms I’ve experienced, while the resident stood awkwardly across the room. (This is when I realized that the resident’s nervousness had nothing to do with me. He seemed almost in awe of Dr. Yonas.)

When he was finished quizzing me, Dr. Yonas sat back and shook his head. “When they did the surgery, they didn’t completely remove the tumor, did they?”

“No,” I explained. “But they got 60% of it.”

“So they left almost half of it. And then, afterward, you had radiation treatments?”

“No. The radiation treatments were before the surgery. 6 weeks, 5 days a week. They said that was the maximum amount.”

He explained that the latest MRI scan looked virtually the same as my scan from 2008, back before I left California. And I braced myself. I held my breath and bit my lip, determined not to cry when he told me that I was imagining my symptoms, as I was certain he was getting ready to do.

“Your symptoms,” he said, “are exactly what we’d expect from a tumor like yours. Straight out of the textbook. And I’m so impressed with the way you’ve adapted to be able to handle them. You’re amazing.”

He continued to explain that, because I was handling everything so well, there was no need to pursue additional, serious treatment measures. “I’d suggest a new MRI every 2 years or so, but I’m your neurologist on-call, if you need anything in the meantime. So what can I do for you today?”

I took a deep breath, trying to swallow my disappointment. I was being dismissed once again. I shrugged.

“No,” Dr. Yonas said. “I mean, what can I do to help you? What symptoms are you having that you haven’t been able to adapt to? What can I do for you today?”

I told him that the biggest issue was the constant pain I had from the intense muscle spasms I experienced, and he smiled. “Why don’t we try Baclofen? It’s used to treat muscle spasms, like you’ve described, in patients who have experienced spinal cord injuries.” He shrugged. “Which is basically what you have, since your tumor is in the brain stem. Would you be willing to try it for a month? Keep a detailed record of how you’re feeling, and come back to see me in four weeks?” He gave me his card. “If you have any problems in the meantime, just give me a call and you can come right back in.”

Then, he shook my hand and asked the resident doctor to write the prescription for me, and left the room. (As I left the hospital, I glanced at the card he gave me and noticed that Dr. Yonas was listed as head of the neurosurgery department. I guess that explains why the resident appeared to be in awe of him, and why the nurse sounded so impressed when she realized I was being seen by Dr. Yonas.)

I filled the prescription on my way home and took the first dose Thursday afternoon. And since starting this new medicine, I’ve had only 3 minor muscle spasms. For the first time in years, I’m not in constant pain!

And so lesson number seven is almost the same as lesson number one: Don’t give up! You may go through days, weeks, months, or even years where no one believes you, and you feel like you have to fight your way through at every turn, but eventually, things can and will get better, if you just keep going. And in the meantime, latch onto the friends and family who are there for you. Remember that you’re never alone. You always have someone on your side, and eventually, you’ll make it through.

 

And the “bonus lesson” learned? My story isn’t over. Right now, I’m living “happily ever after,” but I realize that there will be more trials ahead. There always are. And when I find those bumps on the road, I can move forward with confidence, secure in the knowledge that, even though there will always be more trials to come, no troubles will last forever. And I’m pretty amazing. I’ll adapt. I have my family, friends and the Lord on my side, and whatever comes, I’m strong enough to get through it.

Lessons from my Brain Tumor, part 5

If you haven't read the beginning of my brain tumor story,

you can read part One, Two, Three, and Four of the story by clicking the links.

By late 2005, it had become easy to ignore my brain tumor. Since my radiation treatments had finished in late 2002, I’d gotten into a routine and adjusted to life with a brain tumor. And because something like a brain tumor isn’t a very visible condition, it was easy for my friends and family to forget about it somewhat as well. After my surgery in early 2006, however, friends and family dropped back into the habit of treating me like a fragile, porcelain doll. By the time we moved from California to Maryland in January of 2009, I was tired of being “the lady with the brain tumor.”

I had a fresh start, with people who didn’t know anything about me, and I decided to keep the news of my brain tumor as private as possible. I made my husband and children promise that they wouldn’t tell anyone about my tumor, and I decided that, other than the regular follow-up doctor’s appointments I knew I’d still have to endure, I would ignore my tumor and pretend that life was completely normal.

Because there’s really no such thing as “normal,” but brain tumor or no, I wasn’t going to get any closer to “normal,” and I was tired of being defined by something I had no control over. And my amazingly-supportive family must have realized how difficult it was for me, because they agreed to my decree without a single argument.

So we drove cross-country, from California to Maryland, and I declared myself “brain tumor free” as we crossed the border into our new home state.

In real life, I couldn’t ignore the issue as much as I wanted to. When my new friends began to worry about my frequent dizzy spells and balance issues, urging me to consult a doctor, I had to admit that I already knew the cause for my odd symptoms, and I let them in on my secret. So a few, very select, close friends knew about my health issues, but I didn’t broadcast my tumor, and my children were true to their promise. They kept my secret, and I got to enjoy life as “Veronica Bartles” again.

I was no longer “that girl with the brain tumor.”

I enjoyed my new tumor-free status so much, in fact, that I didn’t put up much of a fight when the neurologist I was assigned to for my follow-up appointments declared (without consulting the medical records I provided): “You don’t have a brain tumor. You never did. And I’m not one to say your doctors in California didn’t know what they were talking about, but…” He dismissed me from his office. Told me he could prescribe thirty-days’ worth of muscle relaxants to help with my muscle spasm issues, and indicated that if I persisted in hypochondriacally holding to the belief that an imaginary tumor existed, I should seek help from a mental health professional.

I tried a few times to get a referral to another doctor for a second opinion, but when the referral coordinator explained to me that this doctor was the only option authorized by my military insurance provider, I decided not to keep pushing the issue. After all, I wasn’t exactly dying. And I was totally ready for a break from the constant tests and follow-up doctor’s appointments. And it was really nice to play make-believe for a little while.

Yes, I worried from time to time. Like when I woke up one morning and literally couldn’t get out of bed, because my muscles simply wouldn’t respond to my attempts to move. (Lying in bed, paralyzed, for three hours, while your mind races through every “what-if” hypothetical scenario is REALLY not fun.) Or when my kids started daydreaming about what they wanted to do/be when they grew up, and I wondered “Will I still be here when my children are grown?” And every now and then, I thought that, maybe, I should push again for an appointment with a competent doctor. But I was enjoying the “brain tumor vacation” too much to ruin it by rocking the boat.

Until my husband got orders again.

In April 2012, we received word that we would be relocating to New Mexico. And I had to gain medical clearance before we could move. Which meant I had to provide the military medical coordinators with copies of my medical records, including the reports for the follow-ups I should have been having all along. Reports that didn’t exist, because I didn’t push the issue when Dr. Incompetent dismissed me.

After a three-month process, which included contacting all of my doctors from California and coordinating a plan for future care with the military group in New Mexico, I finally received the required medical clearance paperwork, along with a strong reprimand from the military medical group and orders not to allow my follow-up care to slip through the cracks again.

Determined to “be good” this time around, I made an appointment with my primary care doctor as soon as we got to the new base in New Mexico. And he told me that it was pointless to bother with follow-ups on the brain tumor, since I’d gone more than three years without follow-up appointments while in Maryland and nothing bad happened. He advised me to take more multi-vitamins, and he said we’d revisit the issue only if my symptoms got bad enough to put me in the hospital.

I switched to a different primary care doctor.

I feel like I’m back to square one, fighting to be taken seriously by doctors who are determined to believe that my medical issues are all in my head. (Duh! They totally are!! That doesn’t mean they’re imaginary!)

After a LONG conversation, where I had to go over the whole story again and totally ended up in frustrated tears, I convinced my new doctor to put in a referral to a neurologist. I suspect that he put in the referral simply to get the crazy, crying, basket case out of his office. And you know, I’m totally okay with that at this point. If I have to resort to tears to manipulate the doctors to listen, I can pull out the tears. (I have my first appointment scheduled with the neurologist next week. Fingers crossed and fervent prayers that it will go well!)

The primary care doctor also referred me to a dietician and another doctor to discuss my weight (after seven years of trying multiple diet and exercise plans, I still haven’t been able to lose the weight that I gained while on the steroids – I’ve about given up on ever looking beautiful again, but I’m not above grasping at straws, so I happily accepted these referrals). Unfortunately, this new doctor walked in, took one look at my overweight body and jumped to conclusions. Obviously, I must stuff my face with junk food 24/7, and if I would only get off my lazy butt to exercise once in a while, I could bring my unhealthy weight under control.

After more than half an hour, trying to get this doctor to hear me, I was in tears again. At which point, she declared that I was obviously depressed, and if I wasn’t willing to make appropriate lifestyle changes, she couldn’t understand why I’d even bothered coming in to see her.

I have to admit, I felt totally betrayed. I’d gone into this appointment full of hope, certain that I was going to meet with a partner, who would help me try to find an option I hadn’t yet tried. Instead, I felt like I was locked in a room with that mean girl from high school, who made herself feel superior by pointing out the flaws and weaknesses of everyone around her. And by the time she finished telling me that I was fat because I was lazy and suffering from depression and she couldn’t help me because I wasn’t willing to do anything to help myself, I couldn’t stop crying. I left her office and cried for the next three days.

And then I dried my eyes and took a deep breath and got back on the treadmill to keep moving forward. Because quitting simply isn’t an option.

But moving forward doesn’t mean I have to keep beating my head against a brick wall.

Perhaps, it’s time to take a new approach.

My particular brain tumor is one that likes to camouflage itself. It hides from the normal scans – and even the more in-depth scans. Even the doctors who really knew what they were looking for had trouble seeing it.

And my quality of life really isn’t that bad. Yes, I have frustrating issues. I would love to be able to consistently control my own muscles, and trust that my arms and legs and hands are going to work when I need them to. But even when my brain-tumor-inspired quirks pop up, I muddle through. I’ve been dealing with these issues for years. And I’ve proven time and time again that I can do so much more than I thought I could.

But the thing is, there isn’t a magic pill that can suddenly make me “all better.” And even if the doctors decided to open me back up for an additional surgery to remove the remaining tumor, there’s no guarantee that it would fix everything. So I have chosen to stop fighting.

No, this doesn’t mean I’m giving up. I’m not planning to roll over and die. I still expect to live for quite a while yet. But I’d rather live my life, whether it’s for the next sixty years or the next sixty minutes, enjoying my friends and family and being grateful for the blessings I have in my life. I’m tired of fighting to make people “take me seriously.” You can’t force people to care. You can’t make people love you. And if I fight hard enough, I might be able to force people to work with me on my terms, but it won’t be a pleasant experience for anyone involved.

So the sixth and “final” lesson I’ve learned from this brain tumor is this: Life doesn’t come with any guarantees. I may not always be able to count on the people I expected to count on, but sometimes, the people I never expected to be there for me will step up in surprising ways. I may not always be able to be where I wanted to be, but sometimes I might find myself in a place that’s even better than I imagined. I may not always be able to do the things I want to do, but I can do the things I need to do. And I have a team of hundreds, maybe thousands, of friends and family members who have my back when I’m not strong enough to do it on my own.

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

Update!! Read the latest on my Brain Tumor Saga here.

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

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

Lessons Learned from my Brain Tumor, Part 2

If you missed part 1 in my brain tumor story, click here to read it and catch up.

By the time my brain tumor was discovered, I had all but given up on myself. I was convinced that I was a hopeless hypochondriac, forever doomed to a life of sub-standard living, because no matter what I tried, I couldn’t stop inventing make-believe symptoms. Which meant I would never have a chance to feel better.

So when they finally discovered the tumor and I met with a neurologist who explained the options for my next step, I was practically giddy with excitement. This diagnosis, for me, was not a death sentence. It was a much-needed reprieve! I was so thrilled to discover that I wasn’t actually a crazy woman that I wanted to share my good news with the world!

As I left the neurologist’s office, on our way out to our favorite restaurant for a family celebratory dinner, I called my parents. “Good news, Mom!” I gushed, as soon as she answered the phone. “I have a brain tumor!!”

The line went silent.

And suddenly, I realized that without the proper context (the years of questioning my sanity, the frustration over feeling sick all the time for no apparent reason, the new promise that my condition might respond to treatment), the idea of a brain tumor wasn’t necessarily joyful news.

And to make matters worse, Mom had answered the phone by putting me on speakerphone – because they were having a big, family dinner with all of my brothers and sisters that still lived in my home town. In one fell swoop, I’d managed to freak out almost my entire family!

Ooops!

I quickly backtracked and explained that this really was a good thing, because it meant there were options for treatment. I didn’t have to be sick all the time for no reason anymore. And by the time we hung up, my parents, siblings, nieces and nephews all told me that they understood. And they offered semi-heartfelt congratulations on my diagnosis.

Of course, they didn’t understand. Not really. Even my husband and children couldn’t truly understand the immense relief and gratitude I felt. Because they hadn’t lived inside my head with all of the doubts and fears. They didn’t know that even the scariest something was far easier to deal with than the nothing I’d lived with for so long.

Unfortunately, I was so caught up in my relief and joy that I didn’t really understand how scary this diagnosis was to everyone else. I simply expected them to be as happy about it as I was.

As word spread about my brain tumor, people started treating me differently. I had always been the person that people would come to for help, the one everyone looked to for strength, to lift them up when they stumbled. And I was comfortable in that role.

Suddenly, my friends and family were tiptoeing around me, walking on eggshells, acting like I was a fragile, porcelain doll who might break if someone breathed on me the wrong way. I was no longer “Veronica.” I was “the girl with the brain tumor.”

My brother (a junior in high school at the time) volunteered to come live with us for a year, to help out while I went through radiation treatments. Friends and acquaintances from church volunteered to babysit my children each morning as I travelled from Beale AFB to the UC Davis Cancer Center in Sacramento, CA (about an hour drive) for my treatments and various follow-up appointments. My husband’s commanding officer coordinated the squadron to bring us dinners from time to time, so I wouldn’t have to cook.

And I appreciated all of the help, even though I sometimes chafed at my brother’s attempts to care for me (I didn’t need permission to stay up past my “bedtime,” if I wasn’t sleepy!), and sometimes dropping my children off at the home of the friend who had volunteered to babysit took us a half-hour or more out of our way. I knew they all meant well. They were doing what they could to help, when they felt completely helpless. And I had to allow them to do so.

Still, it was probably the most frustrating period of my life. Even more than dealing with an unidentified, mysterious illness. I didn’t want to be “the girl with the brain tumor.” I wanted to be “Veronica” again, and I was tired of the way everyone stared at me with pitying looks. I didn’t want to be the charity case.

When, a few months after my diagnosis, my whole extended family gathered at my grandmother’s house in southern California for Christmas, my frustration over this new challenge came crashing down.

One afternoon, we decided to go for a walk on the beach. We were strolling along, enjoying the sand and the crashing waves, and in this, my favorite setting, I was finally feeling a little bit like my old self again. Until my mom glanced over at me to say something and stopped dead in her tracks, a look of horror on her face. “Who let Veronica carry the baby?” she demanded. “She might drop her!” (For the record, I had let myself carry the baby, since the baby in question was my own little girl, and I had been carrying her around just fine for six months without ever dropping her.) I expected the rest of my family to tell Mom she was overreacting, but instead, they reflected the same terror. No one had thought about it before, but as soon as Mom pointed out the danger, it was abundantly obvious to everyone that I couldn’t be trusted with such precious cargo.

I handed over my baby girl and not-so-graciously accepted the help of my brothers, who suddenly realized that I shouldn’t be walking on a foundation as slippery as sand without someone on either side of me to hold me up.

I came home from this vacation in tears. For the first time, I began to realize that this brain tumor diagnosis, which hadn’t changed much in my own life, except for the better, was a terrifying death sentence waiting to happen, as far as everyone else was concerned. I didn’t want to be “the girl with the brain tumor” anymore! I wanted to be myself!

That’s when I met Anikai.

She had been visiting family for an extended period, so she wasn’t around when we moved to Beale. And she wasn’t there to hear about my brain tumor diagnosis. So she didn’t know she was supposed to tiptoe around me. She sat next to me in church one day, and we started talking easily. I quickly realized that she didn’t know about my tumor, and I was grateful for a new friend who could see me as just plain Veronica.

Then, a mutual friend sat beside us and asked, “Oh, Anikai, have you met Veronica? She’s the one with the brain tumor.”

And Anikai responded in the best way possible: “Oh! You have a brain tumor? My mom died from a brain tumor!”

The room went silent. Everyone was afraid to even breathe, waiting for me to break down in tears. Because, obviously, you don’t mention the D-word around someone with a brain tumor! And poor Anikai looked like she wanted the floor to open up and swallow her. She had only wanted to let me know she understood a little bit of what I was going through, and now she was afraid I thought she was telling me I was going to die.

I laughed.

Finally, I had a friend who understood that the brain tumor was something that I have and not something that I am. To this day, I consider Anikai to be one of my closest friends*.

Second lesson learned from my brain tumor: Most people are well-intentioned, even if they don’t always know the best way to support you. I didn’t really need babysitters for my children during my radiation treatments. The cancer center had a large waiting room full of toys and books to keep them busy during my fifteen-minute appointment each day, and the doctors, nurses, and technicians were used to family members coming along. But I forged some lasting friendships with the people I allowed to help me. Sometimes, it’s better to smile and graciously accept the offered service, even if it’s not actually as helpful as they want it to be.

Third lesson learned from my brain tumor: An illness doesn’t define a person. And life doesn’t stop at diagnosis. If you have questions about what someone is going through, it’s okay to ask, as long as you do so with respect. Sometimes, “My mom died from a brain tumor!” is more helpful than “Oh, you poor thing.” (Honest reactions are appreciated, even when they aren’t necessarily the most diplomatic responses.)

*Side note: A few years after that first conversation sealed our friendship, Anikai and I were in a book club together. One evening, the book we were reading led to a discussion of dealing with a parent’s death. Anikai grinned at me and said, “My mom died from a brain tumor.” And then we both started giggling uncontrollably. The other ladies in the book club didn’t know what to make of these two insane people who thought death-by-brain-tumor was so freaking hilarious!


Read Part 3 of my Brain Tumor Story

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Go Back to Part 1

Lessons I've Learned from My Brain Tumor: Part 1

Okay, so by now you know that being serious is not something I do well. I’m an optimist by nature, and I don’t like to step out of my happy, little world of rainbows and bubbles. I try not to dwell on anything that might cause frowns and tears, because smiles and laughter are so much more fun. But this blog post has been slowly building for a while now, and I feel like this is an important topic that I can no longer ignore. (I’ve decided to share my whole story, but it's much too long to fit into one blog post, so the story will be coming in installments.)


Brain with Tumor by Philip Bartles

For those of you who may not know, I have a brain tumor. It’s not one of those say-your-final-goodbyes-because-your-days-are-numbered brain tumors. In fact, when the doctors finally discovered it (back in 2002), they explained that it’s actually “as benign as a brain tumor can be.” Unfortunately, there’s no such thing as a completely benign brain tumor. Even the non-malignant tumors can cause problems, simply because of their locations. And mine just happens to be located in the brain stem. And so it interferes, from time to time, with every single system in my body. This is what kept the doctors from finding it for so long.

I’ve always had weird quirks. When I was a kid, my family used to tease me about the way I’d get sick every time we went on vacation or planned some big family outing. It never turned out to be the flu or any “real” illness – I was just “sick” for no apparent reason. My family used to say I was simply “allergic to fun.” I’d laugh it off with them and spend the majority of our vacations curled up in bed with a thick book and a splitting headache.

I was too embarrassed to admit that the reason I always ran out all the hot water when I took a shower was that the combination of the steam from the warm shower and raising my arms to shampoo my hair would cause me to pass out, and that it wasn’t until the water turned cold that I would wake up again. I’d mumble apologies to my family for being inconsiderate and promise not to do it again… And eventually, I learned to take my showers at night, after everyone else had gone to bed, so no one would notice I’d used all the hot water again.

When I was in high school, my childhood asthma reappeared with a vengeance. I had periodic attacks that would come on without warning and last for hours, and the inhaler rarely (if ever) helped. And the breathing issues got progressively worse until, one day when I was in college, I wound up crying in the back of my religion class because I literally couldn’t breathe. I could exhale just fine, but every time I tried to breathe in, it was like a valve was closing over my throat, blocking my windpipe. My Bishop sent me to see a specialist, who diagnosed vocal chord dysfunction and prescribed physical therapy to teach me to control the muscles in my throat that tried to close off my breathing tubes at random moments.

Headaches, dizzy spells, blackouts, nausea, intermittent vision problems, breathing issues, heart palpitations, muscle aches… My semi-serious and seemingly-unrelated symptoms got more and more frequent as the years passed, but by this time, I “knew” that there wasn’t really anything physically wrong with me. I was a hypochondriac, who invented random health problems to get attention. And the only way I’d get over the habit was to ignore my made-up symptoms and keep them hidden from the world. Once I trained myself to understand that people would notice me without my dramatic “health problems,” I’d be able to stop inventing trouble for myself, I was sure.

It wasn’t until my second child was born that I began to wonder if, perhaps, my health problems were real and not the result of a severe case of hypochondria. I knew from experience, after my first child was born, how difficult it can be to lose the excess baby weight… but this time around, I not only lost the weight within days after coming home from the hospital, but I continued to lose weight far too rapidly to be considered healthy. By the time my daughter was 2 weeks old, all of my pre-pregnancy clothes were much too big for me. And every 3 or 4 days, I had to go shopping for a smaller size, until I was wearing the same size jeans I wore when I was in 6^th grade… and I was still losing weight.

People commented on how great I looked, and told me they wished they knew my secret. I was scared, because I knew the biggest factor in my extreme weight loss was the way I couldn’t keep any food down. The only food that didn’t make me throw up was air-popped popcorn. And that’s what I lived on for nearly 6 months.

When I blacked out one afternoon and fell over (breaking my back), I went back to the doctor. There had to be something physically wrong, I reasoned, because I wouldn’t really do this to myself, would I? Two months and many tests later, the doctor declared that there was nothing physically wrong with me. It was all in my head.

And so I tried even harder to ignore all of my “made up” symptoms. If I was inventing these various illnesses, I could control them. I just had to try harder.

A year later, when I blacked out again – this time, when I was home alone with my 2 small children (ages 15 months and 3 years) – I decided to go back to the doctor. I’d tried for years to ignore my hypochondriac tendencies, and instead of getting better, the “imaginary” symptoms were getting worse. And I didn’t feel safe being at home alone with my children. I had to do something! I made an appointment with my doctor, and then I pulled out a piece of paper and wrote out a list of all of my symptoms.

All of them.

And the list took up both sides of the paper.

I felt silly walking into the doctor’s office with such a long list of complaints, especially since I’d been dealing with most of the symptoms for my whole life, so they probably weren’t related to my recent issues. But they might be related to whatever underlying health issue I was facing, so I didn’t want to leave out any vital clues.

When I walked into the doctor’s office, I handed my list of symptoms to the nurse who was taking my vitals. She glanced at it, her eyes widening in shock, and explained that they’d only scheduled me for a 15-minute appointment. I would have to pick one symptom, she said, because that’s all the doctor had time for.

All of my fear, worry, and frustration boiled over into anger, and I shoved the list into her hands. “I’ll tell you what,” I snapped. “You give the list to the doctor and let him pick one symptom, because I don’t know which one is important.”

She left the room in a huff, and less than a minute later, I heard the doctor announce, “Tell the people at the front desk that I can’t take those extra appointments this morning. I’m giving this patient her full appointment time.”

Months later, after I’d visited every specialist imaginable – with doctor’s appointments often two and three times a week – they finally ordered an MRI, as a last resort. But by this time, I was pregnant again, and they had to postpone the test. (There’s no evidence that an MRI is harmful to a growing fetus, but no one wants to take that risk, and so unless it’s urgent, they’d rather wait on tests like this.)

After my third child was born, I went back to the doctor (we’d since moved, so it was actually a new doctor at this point) and asked him to schedule the MRI. He insisted that I didn’t really need this expensive test. “The only thing we’d be looking for is a brain tumor,” he said. “And I’ve studied your medical records. I can guarantee that you don’t have a brain tumor.”

The day after my MRI, he called to apologize. “I never should have guaranteed that we wouldn’t find anything.” – And as it turned out, every confusing and unexplained symptom on my long list could be traced back to this tumor. Because when you have a growth in the brain stem, interfering with the signals your brain tries to send to the rest of your body, it sometimes makes your body behave in strange ways.

My first lesson learned from this brain tumor: You have to be willing to fight for yourself. No one else knows your body better than you do, and you need to be willing to trust your instincts. After years of being told, time and time again “It’s all in your head,” I finally had proof that it really WAS “all in my head!” But that didn’t mean I was making things up!

 

 Read the second part of my Brain Tumor Story here.
Read part three of the story here.