This is why I don't want cancer

Last spring, Brad’s parents got tickets for the whole family to go on a Caribbean cruise over Thanksgiving. We, of course, were thrilled—it was a cruise, for heaven’s sake, and spending a week hanging with Brad’s siblings and their kids sounded perfect. I adore Brad’s family (I sometimes tell him I married him just to get in), so we’ve been looking forward to this trip for months.

When we learned about my cancer in September, one of the first questions we asked the doctors was whether we’d still be able to go on the cruise. All of them said yes and were very supportive of us going and enjoying ourselves. The timing of my treatment was such that the cruise fell between my radiation and immunotherapy, so I anticipated a worry-free, get-away-from-it-all week basking in sunshine and delightful people. As I glibly told my father-in-law before we left, cancer was not invited.

But it came.

Stupid cancer stowed away on our cruise vacation and reared its ugly little face in all my best moments. In every glimpse of ah, this is perfect, a niggling little thought wormed its way in:

This is why I don’t want cancer.

Lame? Yes. Totally. But there it is. On this week, when everyone else is proclaiming gratitude for all their blessings, I keep having to disappear on the ship to go feel sorry for myself. Because my life is too good. 

I don’t want it to end. I don’t want to miss out on any of it.

It’s making for an odd cacophony of emotions. Every burst of happiness is accompanied by an equal slam of despair. Times like the formal night, when I wore a new dress and the most painful shoes known to man, but it was worth it because I felt goooood. Brad’s eyes lit up when he saw me, and I cocked my hip, giving him my best, but then I thought this is why I don’t want cancer, and the moment was over.

Or the night I stole into our dark stateroom after a late show and found Lukie zonked on his bunk. He stirred at my noise, and his sleeping face turned when I approached. My momma’s heart swelled, then broke at the cute little nose and twitching eyelashes I’ve kissed for eleven years. This is why I don’t want cancer.

Or the five minutes in Honduras when Brad had cell phone coverage and we got a call from Jessica telling us she got engaged the night before. We were in the middle of ziplining, perched on a rickety wooden platform overlooking the jungle, as our daughter described the perfect proposal orchestrated by McKay, a young man who already feels like part of our family. I listened to her gush about all the details, so obviously happy and in love, and I remembered how I felt when my own dreamy boyfriend proposed to me twenty-three years ago. Then that same dreamy boyfriend grabbed my hand as we listened to our daughter, tears in his eyes, and all I could think was this is why I don’t want cancer.

Or the night at dinner when Becky said something funny—I don’t remember what, but she’s always saying something funny—and as we all laughed and tried to keep the Diet Coke from shooting from our noses, I imagined this scene with my chair empty. And started to cry. Not for them, or even for Brad (well, maybe a little for Brad), because they’ll all be okay and Becky will keep saying funny things, and they’ll all still have Diet Coke at the ready to spray from their noses. But if I’m not there, I’ll miss it. I’ll miss every little joke and funny moment. I’ll miss them, and I’ll miss being there.

This is why I don’t want cancer.

So, yeah. I’m fun. Right now, I’m in quiet corner of the ship, looking over the pool deck swarming with probably a thousand people swimming and sunning and—for many of them—getting drunk. There’s something silly happening at the other pool—a belly-flop contest or something—and I keep hearing cheers. On all sides, there is nothing but blue ocean leading to blue sky, and it’s like we’re in our own little coconut-scented universe, separate from the world and its cares.

Except we’re not. On this boat of free ice cream and unlimited sodas and food at all hours, an ugly little critter lurks, poking me in the ribs and dampening the sun. It takes me mentally away from the cheering people and the family moments and makes me crave a few minutes by myself to hopefully put my feelings on a page and take them out of my heart. It makes me look over this scene and dig through my purse to find tissue to wipe away the tears before I meet everyone for lunch. I don’t want to ruin the fun.

This is why I don’t want cancer.

Ein deutscher Herzinfarkt

This week was hard for me. Maybe it's because Brad had to travel for work, or because I'm not teaching seminary and therefor don't have anything to DO (and I miss my kids), or because I'm kinda in a treatment vacation while I wait for my brain MRI in order to start immunotherapy, so I feel stalled...I don't know. But I've been in a funk.

This helped considerably:

 
This heart attack--complete with German chocolate and little monsters to scare away the cancer--arrived from my friends in Berlin. The notes are from Dahlem ward members, and I couldn't stop smiling--sometimes through tears--as I read them. Many are written in German, so I couldn't do much besides read the name until Brad got home and translated them for me, but that didn't matter. How I love these sweet people. I was the awkward American who showed up and couldn't speak their language, yet they took me in and looked after me. They invited me to parties, came to my home and apologized for their "poor English" (which was far better than my best German), coached me in German etiquette, smiled at me, translated for me, visited my son in the hospital, let me teach them to dance, visit taught me, and just plain befriended me when I was both desperate for friends yet terrified to have them. Some of my favorite comfort people live in Berlin, and I will love them forever.

Ich liebe dich, meine Freunde. Danke, dass du mir deine Herzen gibst und meine stiehlst.

People who know

Several years ago, when we lived in Michigan, Brad and I packed up our three kids and drove to Rochester, MN to spend Thanksgiving with his brother John. At the time, John was doing his medical residency in Ear, Nose, Throat at Mayo Clinic, and his wife, Lili, was expecting their fourth child. We had a lovely time with them—Lili is a fantastic cook, so Thanksgiving dinner was off-the-charts, and we also got to experience Camp Snoopy at Mall of America—but one incident especially stands out in my memory.

The scoping.

Like I mentioned, John was in his residency at Mayo Clinic, and one morning we left all the kids in the care of a busily cooking Lili (is she a good sport or what?) so he could show us around the world-famous facility. John led Brad and I through gorgeous lobbies and swanky waiting rooms as well as showed us some of the “backstage” doctors’ lounges and offices. It was all very impressive. We finished the tour in the room where John said they scope patients’ sinuses—it looked like an exam room, except there was a large padded chair in the center (like a dentist’s chair) where patients could sit while a doctor checked out the insides of their noses with a scope.

Well, Brad has had nose issues since I met him, so John offered to give him a look. Brad got comfy in the chair while John readied the scope—as I recall, it was a long, wire-looking thing with a light on the end (a camera), and at John’s elbow, a TV screen showed what the camera would see. Like the good doctor he is, John first squirted numbing spray up Brad’s nostrils, waited a few seconds to let it work, then threaded the scope up Brad’s nose.

And the hollering commenced.

“Stop!” “Slow down!” and “WHAT ARE YOU DOING??” (Brad)

“Sit still!” “I do this all the time and patients are FINE!”  and “Quit being such a baby!” (John)

Red-faced and gagging, Brad closed his eyes and tried to breathe slowly, but I could see he was one second away from decking his brother. Meanwhile John leaned forward on his little stool and eased the wire still deeper. “I numbed you,” he said smugly, and probed a little further. “It’s not that bad.”

Brad blinked back tears. “How do you know? Have you ever done it?”

“Well, no.”

A sharpening glare. “Then let me do it to you.”

So, they switched places. John took a seat in the patient’s chair and directed Brad on how the scope worked, then gave himself the numbing spray like he had with Brad. Brad clicked the scope light on and off while they waited for John’s nose to numb, then wheeled himself closer and slid the wire a couple inches up John’s nose.

John shot up in the chair, his fingers turning white around the armrests. “What are you doing?” he yelled. “Not so deep!”

“I’m only this far.” Brad showed a two-inch space with his fingers and smiled an evil smile. “Quit being such a baby.”

The next five minutes are a blur because I was laughing so hard. John squirmed and sputtered in the chair, trying—and failing—to be brave while Brad gleefully shoved the scope up his nose. Every so often John would squeal or moan, which of course only spurred Brad on. “You’re fine. I numbed you,” Brad repeated between fits of laughter. “Quit being such a baby.”

Finally, Brad pulled the wire from John’s nose, and John coughed a few times, wiping at his red-rimmed eyes. “That was awful,” he said, his face still screwed in a grimace. “I don’t know how patients can stand it!”

That, of course, cracked us all up, and we laughed about it all the way back to John’s house. For the rest of the day, one of us just had to say “I don’t know how patients can stand it,” and we’d bust out laughing again. Even now, some thirteen or fourteen years later, I can’t remember it without chuckling. Two grown brothers, shoving state-of-the-art medical equipment up each other’s noses in the middle of the prestigious Mayo Clinic. That’s just good stuff.

But I wonder what John was thinking the next time a patient sat in his chair.

I have no doubt John had always treated his patients kindly—he’s an excellent doctor, and he simply doesn’t have it in him to do otherwise. But after he’d had that scope up his own nose, did he remember how it felt to have it invade his space, numbed or not? Did he warn the patient it was going to be uncomfortable and wince a little with every millimeter he advanced? Did he maybe proceed a little slower, or even a little faster to get it over with sooner?

I don’t know, but I suspect he did. Because once you know, it changes you. And it provides a unique comfort to others in the same boat.

In the past weeks, I’ve been on the receiving end of so much support, and I don’t want to discount any of it. I am so grateful to those who have reached out and prayed for me, no matter what their past experiences. But today, I want to acknowledge those people who know—who’ve faced cancer in their lives and shared their understanding with me—because they offer something special.

You people who know have let me into your lives, making me realize I am not alone on this path and can lean on you as comrades. You’ve shared things like the “sunburn” still marking your skin, months after the breast cancer radiation is finished. Or how you listened to conference talks to calm you during radiation treatments and wondered if it was quite appropriate to listen to the brethren while half-naked. Or tried to connect who you are with the images of your brain and felt your stomach stab with fear at the invading white spots.

Or when you changed into a gown for your first treatment, then stepped into an empty hallway and wondered where in the heck you’re supposed to go.

Or looked into your children’s eyes, knowing the thing that could take you away from them is growing right now inside your body. But you pasted on a smile so they wouldn’t freak out and went back to making their breakfast, because that’s what moms do. And you want to go on being their mom more than anything.

You know.

You have also offered great advice. A friend from my BYU days who had a rare brain cancer reminded me that I am a person first, so I shouldn’t let the doctors or anyone else treat me as a mere “case”. My husband’s ex-boss, who watched her husband fight cancer for fourteen years, gave us two key pieces of advice: keep a journal and don't look anything up. My cousin, who is ten years post-brain-cancer seconded that opinion and suggested I only google “cancer survivors”, and another cousin, who has battled breast cancer, encouraged me to cope however worked for me and not feel guilty about skipping the walk-a-thons and fundraisers and support groups if they don’t feel right to me. They don’t, so I don’t bother with them, and I don’t wear the Fight Cancer t-shirts my doctors keep trying to give me. This blog is my coping mechanism, and you can thank the people who know for turning me on to it. Writing is my thing, and if I’m fighting for anything, I’m fighting to continue to be me.

But more than anything, the people who know have reminded me that I am not the first person to face this. The night before the radiation on my brain, when I was so scared, I got a text from a dear friend who had a similar treatment. This text included current photos of her dancing with her radiation mask—which she has kept—and even giving it a big smooch. I had to laugh; this woman is a class act, always dressed to the nines and saying and doing everything exactly right. To see her acting so goofy with her radiation mask was just what I needed to take the edge off my fear. She told me to think of the pictures the next day when I was nervous.

I did. It helped.

She knew.

For years, I’ve taught Relief Society and institute and seminary—even Primary—and testified of how great Christ’s atonement is because He knew. When He suffered in Gethsemane, He experienced all the pain, fear, betrayal, discouragement, etc. that we would all experience, and that’s why we can turn to Him for understanding and relief. But I have to admit, up until now, that was all just a nice idea. I didn’t really know. 

And if thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good.

The Son of Man hath descended below them all. Art thou greater than he?  (Doctrine and Covenants 122:7-8)

I still don’t know, not like my friends. Every single one of them has told me I will have bad days, and to call them when I do. Right now, I’m at the beginning of this journey and filled with hope, but that probably won’t last. If my friends say so, it’s gotta be true—everything else has been. But thanks to them, I will have somewhere to turn. And thanks to the Savior, I have someone to rely on.

I have people who know.

The Good, the Bad, and the Ugly, Book 2

(I have another post from 2009 entitled "The Good, the Bad, and the Ugly," but the title works so well for what I want to say today, I'm using it again. If you want to read the original, here is the link.)

The Good

Pepper has started his service mission at the Deseret Mill and Pasta! 

The above picture was taken on Sunday, Oct. 22, when he gave his farewell talk in church. As you can see, my parents were there, which was pretty great. Pepper did a fantastic job speaking about how Christ's atonement can help us get through trials, and I was beyond proud of him.

Then last weekend, Brad and I drove him out to UT so he could start on Monday, Oct. 30. He was a little nervous, but everyone there was soooooo nice, and Brad and I left feeling like our boy is absolutely in the right place. The other missionaries seem to have a lot in common with Pep, and after we had an orientation and tour of the mill, Pepper's supervisor took him out to lunch. We spent the afternoon getting groceries, prescriptions, and warm winter clothes, then Brad and I caught a plane back to Texas. A very quick trip, but such a good one.

As thrilled as we are about Pepper's mission, we still cried at the airport. We're sure going to miss this boy. It's mind-blowing to think we only have half our kids with us now.

 

The Bad

A brief update on my treatment, which isn't necessarily bad except that cancer is always bad.

We met with Dr. Cowey on Tuesday to see about starting immunotherapy, and it looks like I'll begin the week after Thanksgiving. He told us about a clinical trial that will combine vedolizumab with the immunotherapy drugs nivolumab and ipilmumab, which will hopefully minimize some of the side effects of the drugs. Vedolizumab is used to treat patients with Crohn's Disease or Ulcerative Colitis, and they're hoping it will reduce the frequency/severity of the diarrhea commonly experienced with the other drugs (diarrhea = also bad).

Since this is the side effect I'm dreading the most, I am eager to participate in this trial to see if it helps. They will do a brain MRI on Nov. 16 to see if my lesions are stable (same size as before radiation) or shrinking, and if they are, I should be eligible for the study. Once that's all figured out, I will hopefully have my first treatment sometime during the week of Nov. 27. The drugs will be administered intravenously about every two weeks for 49 weeks. I don't anticipate this will be an easy eleven months, but I guess it's for a good cause. I just hope it works.

The Ugly

Pepper's mill supervisor took this photo after the tour Monday morning. We'd been wearing the hairnets for a couple of hours and were desensitized to them, so we didn't think anything of it.

Big. Mistake.

Sadly, this is the only picture we have of the three of us on Pepper's first day, but whatever. It makes me laugh every time I see it--especially at Brad. (Sorry, Honey. Love you...)

What Dorothy and I didn't know

"There's no place like home. There's no place like home."

For years, like Dorothy, this was my mantra. Ever since we moved away from our families in 2003, Brad and I have been looking for a way to return to Utah. The plan was always this: Brad would go to graduate school (check), find a job with a big company (check), and we'd move back to Utah before our kids were in high school (no check--not even close).

When Brad was first hired by DaimlerChrysler Financial in spring 2003, we thought we'd hit pay dirt. We packed up our three kids, bought a cute house, and moved to Waterford, MI. We were part of a big influx of move-ins for the Clarkston Ward that summer; in fact, when the bishopric member read the Bellistons' records to welcome them to the ward, he kept glaring at us because we weren't standing up. We were new, too, and he thought we were them (a pretty flattering mistake for us). For the next six years, we LOVED being in that ward and working among the members there. When the time came for us to move on, it truly broke my heart to leave.

But even though I was very happy there and made sooooo many great friends, I always yearned to go home. We'd spend a month every summer in Utah, and every year, I'd cry for the first few miles when the time came to drive back to Michigan. I loved the Wasatch Mountains, the crisp nights, the Sunday evenings chatting outside with family, and even just driving down I-15. Utah was home.

During our time in Michigan, Brad applied for many, many jobs in Utah. But it was like throwing resumes into a black hole--nothing ever came of anything, even though Brad's experience and skills seemed perfect for the positions. To say it was frustrating would be an understatement. It was maddening, but we always consoled ourselves with the great life we had in Michigan. Because it really was great.

Finally, in 2009, Brad was offered a position at Daimler's global headquarters in Berlin, Germany. It was a great opportunity for him to advance in the company and help us meet some goals for our family, so we took it. However, for those of you who flunked geography, Germany was a move in the opposite direction from Utah. And it was a looooooong way away.

For the next three years, I sometimes wondered if we'd made a mistake. We missed our friends in Michigan, we missed the ward we felt close to, and we missed speaking English--little things like answering the telephone and going through a McDonalds drive-thru seemed like the high life. But once again, we consoled ourselves with the good people we got to know. I befriended some displaced Americans like myself, and a couple of them are like my sisters now (Go, Thai Tuesdays!). I was able to teach an English-speaking institute class, and I grew to absolutely adore the students who made me feel like I belonged. And even though we didn't speak the same language, the Dahlem Ward gathered us in and took care of us.

Once again, when the time came to leave, my heart broke a little.

In 2012, Brad's work visa expired and we were transferred to Fort Worth, TX. I'm not going to lie--things like Taco Bell and free drink refills made this move pretty swell. Just being back in the United States felt like a homecoming, even though we'd never lived in Texas before. It took me a while to find people here, though--I think I expected to land back in the States and find another Clarkston Ward, and that didn't happen. Despite people being friendly and welcoming, we just didn't connect. I think it was our fault. Our experience in Germany had left us a little socially shy--at least I was. After three years of feeling like an outsider, my self-confidence was shot. It was very hard to extend myself.

Within a couple of months, I was called as Primary president in our big, just-split-us-already ward, and I really, really, really, really didn't want to do it. I kind of wanted to sit in the back row at church and "find myself" again. Plus, children were not my thing. I wanted to get to know grown-ups.

But after a couple of months, I couldn't imagine myself anywhere else. Those little faces--raised and ready and full-of-faith every Sunday--were like balm to my battered soul. I came to crave their hugs and funny answers, and I still can't sing "I Stand All Amazed" without hearing a roomful of children belting out "Oh, it is wonderfuuuuul" and tearing up. Through that Primary calling, I worked with other leaders that have become friends, and you've seen how my Texas people are looking out for me now. Once again, the people I've met have made living away from home bearable.

But Brad and I have never stopped trying to go home. He hired a big-shot recruiter who promised to find him a Utah job within one year, and it has now been six. Often, Brad shows me a job posting he'd be perfect for, but when he applies, his resume disappears into a dank, dark hole. He's had a couple of interviews, and they seem to go well, but for one reason or another, nothing comes of them. We've watched people get hired by Utah companies and move back, and while we're happy for them, there's always a little twinge of why not us? Because honestly, it doesn't make sense, and even more honestly, it makes us mad. We're good people, right? Why can't we have this one thing?

Now, I think I understand.

Over the last few weeks, I've said over and over again how much I appreciate the people who've rallied around me. The love and hope people have expressed in my behalf has seriously overwhelmed me at times. It has been such a gift, and one I never saw coming. This was really driven home when I got this box in the mail:

It is full of cards and notes from my Clarkston Ward friends, as well as a Visa card with a very generous amount to go toward gas and comfort items during my treatment. Y'all, I haven't lived in Michigan in eight years. Yet the people there took the time to write me letters of love and encouragement. And I can feel it in every word.

When I first opened the box and read the words on the lid, I of course burst into tears. I think I said something to Brad like, "This is my army," because that's all I could think. I opened the envelopes and read each one, and I couldn't stop crying with gratitude for these sweet people in my life. All those years when Brad and I felt so picked-on because we couldn't move home to Utah, and God was giving us a gift.

He was building my army.

I look back on the last fifteen years, and I wouldn't change a single one or wish for a different location. In every place we've lived, we've met people who have both accepted us for who we are and made us want to be better. We have fallen in love with so many, and now that love is surrounding us when we need it. I've gotten texts and messages and notes from literally all over the world, full of memories and ways lives have been touched because we lived where we lived. In some ways, it's been my own personal It's a Wonderful Life. Like George Bailey, I've been able to see the difference my small influence has made.

But more than that, I can see now that Heavenly Father had a plan for me, and He knew I'd need an army. So He lovingly listened to our pleas to move home, and probably smiled to Himself, knowing He was giving us something better. I imagine Him thinking something along the lines of Jill, just you wait. Someday, you are going to find yourself in a situation that will scare you and make you sadder than you've ever been. You will feel hopeless and helpless and lie awake at night, worrying about your future. 

But don't you fret. I've got you covered. Because I am at work assembling an army that will make it okay. All these people you know--from Michigan to Germany to Texas--are going to stand with your family--who will always be there for you, no matter where you live--and they are going to save you. They are going to remember you and love you and remind you that you are more than your body--you are more than cancer. And this will give you power. It will enable you to square your shoulders and look your worries right in the face and say "It will be okay." 

Because it will. I am in charge, and you will know that. And part of the reason you'll know that is because I'm giving you my best thing. People. 

These are my people, and they will take care of you.

So all those years I mentally clicked my heels together and wished I could go home? I don't wish that anymore. I am so grateful for the time I spent in my Oz--or Ozzes--because I've learned something on my yellow brick road.

Oz is magical, too.

How you doin'?

This is the question I've been asked the most this week (although without the same smarminess as Mr. Tribiani), so here's a little update:

I'm actually feeling pretty good. I've been tired and a little headachy, but honestly, it's been okay. I can tell when I've pushed myself too far, because I can feel my brain swelling in my teeth--yeah, it's weird--but my teeth feel all soft and moveable when I bite down. It's like when you have a sinus infection and can feel the pressure in your face. It doesn't hurt, but it's a definite sensation. The doctor told me a little swelling is normal and not to worry about headaches unless they are too severe to be handled by Tylenol. So far, so good. I usually need a couple Tylenol to get me through the day, but as long as I get a nap in the afternoon, I'm okay. I'm also sleeping at night. HUGE improvement.

Plus, my parents have been here all week, so I'm feeling spoiled. My dad brought his toolbox and has been fixing things around my house I didn't even know were broken. Mom's been cooking--Lukie swears she makes the best tossed green salad--and just generally being the comfort person she is. It's been perfect. Sometimes you need Mom and Dad around, not necessary to do stuff, but just to be there. I've loved it.

Although...one thing was odd. We played Quiddler the other night, and I came in dead last. Last, y'all. Against my dad--who was way ahead most of the game--and Brad, who ended up winning. This never happens. About halfway through, Brad looked at the scores and joked that maybe we should call the doctor--we are supposed to be watching for unusual behavior, as it could be an indication of bleeding on the brain. I just showed him my cards. An X, Q, J, Z, and one vowel, an E.

So, no brain damage. I defy anyone to make a word out of that.

Best. Surprise. Ever.

 Look who appeared in my kitchen Saturday morning!

 Too bad she could only be here for two days. I'm not complaining, though. I sure love my girl.