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A Not-So-Gentle Reminder

It was 1:00 AM. I woke up, shivering, in a cold sweat. Something wasn’t right. I got up to go to the bathroom, and then the shaking really started. My head hurt, and I was cold, yet hot.

“Oh no!” I thought. “I have what the kids had!”

Every mom picks up bugs from their kids sometimes, and every mom knows she’s not allowed to be sick, . . . ever. If mom gets sick, then who takes care of everyone else?

Hopefully every mom has an amazing husband, and obedient children, who pick up the slack when she’s not well. But most moms want to do as much as possible, even when they are sick, precisely because they want it done ‘right’.

My dread at being ‘under the weather’ was more than just not wanting to let my family down, though. I was on new chemotherapy drugs, which suppress my immune system, and knew that it could be bad if I got sick. I rationalized that my kids’ ailment only lasted for two days, and so, with any luck, I wouldn’t be down for long.

On day two, after a constant cycle of chills, fever, vomiting, and blacking out, when my temperature reached 104.5, we decided to call my oncologist, even though we knew what she would say. Sure enough, she wanted me to go the emergency room. Even then, Branden and I debated if that was really necessary.

Lab tests showed that I had an infection in my body. I got some IV antibiotics, and was sent home with oral antibiotics. We had done the right thing, now I just had to wait to get better.

Two days later I was still chilling and spiking high fevers. Branden called the doctor again, and she summoned me to Huntsman Cancer Hospital to be admitted. By then, the cultures from my emergency room visit revealed that the infection was in my kidneys and blood. I was septic. This was definitely not what my kids had. I was now in a fairly serious medical condition.

I spent four days in the hospital battling fevers, migraines, stomachaches, and more. After feeling well for so long, this was miserable. My mother-in-law and Branden made sure things ran smoothly at home, while I lay in the hospital, sick, sick of being sick, and lonely.

A few years ago, when I was in chemo, I became quite ill, and was hospitalized for nearly a month. Those memories came flooding back, from the uncomfortable bed, to the view from my window, and the smell of the hospital. Mostly though, I felt sad. I knew I would be home soon, but I missed my family terribly. I reflected on the uncertainty we have in life, and knew I wasn’t in complete control of my health, no matter how much I ran, or ate the right foods.
I began to improve, and knew I would go home shortly, so I reflected on what I should learn from my sick week. At the hospital, I didn’t have the clothes, bed, food, or slippers I wanted, but that wasn’t what mattered. What stung was that I was robbed of time with my family.

There is no thing, accomplishment, or experience that can take the place of the ones I love. This summer I will value the happy time I have with my children home from school. I will play with them, snuggle, be more patient, and appreciate them more. I will never forget that family is my greatest treasure, and there really is no place like home!

At Newport Beach

Last week our family decided to blow off school and work, and head to California for some sun and sand. I reminisced aloud to my four children about the Spring break trips our track team took to Newport Beach when I was in college. Our coaches saved money from some of our other trips during the year, so that our week-long trip during Spring break, with a few low-key track meets to make it legit, was special.

On the second day with my family in the hotel I searched for the nearest grocery store, and discovered a “Ralph’s” right around the corner. Something seemed familiar. It wasn’t until later that afternoon, as we navigated our way back to the hotel, that I noticed the name of the road we were on.

“Jamboree Road!” I blurted out. Then I saw a sign for UC Irvine, the site of our track meets when we were on our Spring break trips all those years ago.

“This is right near the place we used to stay when I was in college!” As we rounded the bend I looked up at our hotel, seeing it with new eyes.

“This is it!” I exclaimed. “We are staying at the exact same hotel our team stayed at on all our Spring break trips in college!”

There had to be hundreds of hotels we could have picked in the area, but somehow my husband unknowingly booked the one that held a treasure trove of memories for me.

“And Ralph’s! We always went to Ralph’s when we came!” I pointed out the trail that we ran on down by the river, and the hill we climbed to gain access to the track off in the distance.

Back in the hotel I recognized the pool, restaurant, and lounging areas on the room floors where my teammates and I talked, flirted with the guys, stretched, and thought about upcoming races, or planned what we were going to do for fun that night.

Once I dyed my hair dark brown in that hotel because it was a rainy night and the girls in my room were bored. On one of the spring break trips I intentionally ignored a boy on our team I was pretending to not like. I recall card games in our rooms long after we should have been asleep, and going to the mall, beaches, and restaurants nearby.

I almost drowned at Newport Beach on one of our trips. Inexperienced with the ocean, a few of us naively went out too far and got caught in a riptide. “Friendly surfer Tracy” with the gold tooth dragged me back to the shore and said earnestly, “My name is Tracy. I want you to always remember that.” I always have.

Somehow, despite the fact that we played so hard, ate all the wrong foods, and slept so little, we always seemed to get our best times at those track meets. The coaches didn’t put much pressure on us. We didn’t plan our strategy, scope out the competition, or visualize, like we did at other, more important, track meets. We liked to bragged about things like eating a hotdog an hour before running the best race of our lives, or showing up to our race just in time to get to the starting line, and then beating our personal record. I remember running in a race that was not my normal event, and outkicking a girl, whom I later found out was an All-American. My freshman year I watched in awe as a guy on our team qualified for the Olympic Trials. There was something magical in the air at those spring break track meets.

Being at that hotel now, years later, with my husband and four children in tow, seemed so strange. I wanted them to know all I experienced there, yet there was no way for them to understand what those memories held for me. Life was so simple then compared to now. That was before I knew who I would marry, before kids, before much responsibility, before cancer.

I’m happy, but not carefree. I worry about my kids, my husband, and my health. We went on this trip to get away from real life for a week, and somehow we ended up in a place that caused me to reflect more on my life. It didn’t seem like a coincidence to me.

I thought back to the worries I had when I was in college. I worried about grades, boys, and my next race. I didn’t have much money at all, but I didn’t really worry about that.

I marveled at those races we ran over spring break. Why did we run so well when we seemed to not prepare for those races? Isn’t preparation usually a good thing?

Then I realized, we were prepared for those races. We had been training all season, and were experienced in racing. We knew the best strategies for our races from hundreds of previous track meets. It wasn’t necessary to know the competition before we raced them. In fact, sometimes we were more confident in our abilities to beat the competition when we didn’t know how good they were supposed to be.

Back in college, I had no idea what the future would hold, but I didn’t worry too much about it.

Now, I am still uncertain about the future, but too often I let myself worry about the unknown. When I am living in the moment and take a look at my beautiful children and amazing husband, I am truly happy.

I’m in a battle with cancer, but I feel more capable when I don’t worry about the competition. For now I am winning the race.

I’m more prepared for challenges than I used to be. I have had hundreds of them in the past. Worrying more is not the answer. When I place less pressure on myself, but rely on wisdom gained from life’s experiences, I free myself up to succeed. Confidence, not fear, is the answer.

Looking at my family, I am more confident than ever before that I know how to make good decisions. Having an element of the unknown in the future makes life interesting and full of possibility.

My children may not have known that college girl, who was the younger version of their mom, but I know her. She was fearless, and she’s still inside of me.

My new perspective on setting goals

Just as I was about to enter the elevator yesterday at Huntsman Cancer Institute, I saw a familiar face walking toward me. I couldn’t place the face until I looked at the nametag affixed to his shirt. I said his name out loud, and he recognized me at the same time. It was an old teammate from my University of Utah Track days! I think the last time I have seen him was shortly after Branden and I were married.

He is a healthcare professional at Huntsman, which makes it a little odd that I haven’t run into him in the last 3 ½ years, but it’s a big place. It was so great to see an old friend after the somber task of chatting with my oncologist about my health. And this particular guy is a funny man, who always kept the team entertained, so that made it even better.

He went down the elevator and walked out to my car with me while we caught up, very briefly, on how many kids we each have, etc.. Suddenly I recalled a memorable incident when I learned something about goals from him, back in the college track days.

Here’s what happened (and if you are reading this, and were on the team back then, you will remember this, and know exactly who I’m talking about!):

It was Cross-country season, and our team was scheduled to meet with the sport’s psychologist about setting goals. (We were sometimes forced into going to things like this against our will. Attendance was NOT optional!)

The rest of us nodded along compliantly to get through the experience as quickly as possible, while the sport psychologist handed us pencils and paper to write down some of our personal goals for the season. She told us that our goals needed to be obtainable, and something we could control.

After a few minutes she asked if anyone would share one of their goals. “Funny guy”, who was also a good runner and the team captain, raised his hand. “My goal is to win Conference this year.”

The psychologist reminded him that he couldn’t control how fast the other guys in the conference would run. She added, “If you don’t reach this goal, which you can’t really control, you will feel like you failed. You need a goal you can reach.”

“Funny guy” was all serious now. He was no longer nodding and complying. He said, “No. My goal is to win conference. That has been my goal all year, and it’s possible. That’s my goal,” he stated stubbornly.

She countered authoritatively, “That can’t be your goal! You can’t control it, and you will need to set a different goal for this exercise, because you aren’t following the guidelines I taught you about goals!” She was clearly exasperated about his defiance of her goal rules, and she wasn’t backing down.

For the next several minutes, two very determined individuals argued back and forth about what his goals should be. As the conversation heated up, the rest of us smiled nervously at each other, slightly entertained, and slightly bugged that they were both taking this so seriously.

The sports psychologist would not budge. It was her job to teach us about making achievable goals so that we could all feel good about ourselves. She had undoubtedly dealt with student-athletes who felt discouraged when they didn’t reach their lofty goals.

But “funny guy” wasn’t giving in either, and though he wasn’t being mean, he was not in a funny mood.

It ended when he stood up and said, “Look, my goal is to win conference. Period. And yes, I will be disappointed if I don’t reach my goal, but that’s okay. That’s my goal.”

With that, the sport’s psychologist threw her hands in the air and gave up. She was genuinely mad, but “funny guy” was dead serious. Some of us were giggling by now, but we quickly wrote down some “obtainable” goals.

When I reminded him of this incident, he laughed and said that he felt badly now that he had given her such a hard time. “Funny guy” is also a nice guy. But I thought about it my whole drive home.

Goals are our own. Nobody else can make them for us. They have to be personal, or they can’t be effective. There are some good basic guidelines out there for setting goals, but my theory is that if you always stick with “obtainable” goals, you may just be disappointed later that you didn’t really go for it! And guess what? If you set lower goals, you almost certainly won’t reach your potential.

Just minutes before I ran into my friend, I told my oncologist that I had a goal. We were discussing my drug options, and she told me that she felt it was her responsibility to help me continue to feel well.

I told her that I have decided I want to live to be 60. I said, “I know it’s not something that we can necessarily control, but I just want you to know, as we discuss my treatment, that I am looking at this with the long-term in mind. That’s 19 more years.” I motioned to Macy coloring in the chair next to me, “She’s not even five yet, so that’s where my mind is. ‘Feeling well’ is important to me, but it’s secondary to fighting the cancer.” She nodded with understanding, and I was glad she didn’t tell me that my goal was ‘unobtainable’ for someone with stage 4 breast cancer. And if I achieve that goal someday, then I will set a new goal, which may, or may not, be ‘obtainable’.

Goals make us happy. I don’t think it matters as much what the goal is, as how it motivates us on a daily basis. My goal of living to see 60 gives me hope. It makes each day seem less daunting when I plan on seeing my youngest graduate from college, and hopefully meeting a few grandchildren someday, rather than constantly worrying that I need to prepare my kids for the worst. It also makes reaching 60 seem possible, which motivates me to eat healthy, exercise, and choose my treatment plans with wisdom.

Like you, I’m happiest when I’m progressing. I will always have some personal goals, which are less measurable, like improved patience, or noticing the needs of others around me. I have some specific goals, such as organizing my home, practicing the piano, or preparing for a race. As a mom, I have goals about what I want to teach my children. But because of my beliefs, all of my goals hinge on my eternal goal of returning to my heavenly home with my family one day. Knowing my goals helps me determine how to spend my time each day, and helps me to be happy with the direction I am going.

As you make goals for the new year, I challenge you to be thoughtful and determine what you really want out of life. Then make your goals your own, and you will be driven to succeed. You may occasionally be disappointed if you don’t reach the high expectations you have for yourself, but you will find joy in the challenge, and in the new heights to which your goals bring you. Obtainable, shmobtainable!

My interview on Clearchannel Radio

Click on the link below to listen to a radio interview I did about my battle with Stage 4 breast cancer. My goal was to offer hope to those fighting late stage cancer. If you, or someone you know, is in that situation, please share or listen, and know that there are survivors out there.

http://www.knrs.com/media/podcast-feedback-with-abby-bonell-Feedback/feedback-with-abby-bonnelldenise-neish-24986769/

Breast Cancer ‘Early Detection’ Message Insufficient

My Op-ed was published in the Deseret News on May 29, 2014. Click on this link to read it, or just read it below!

http://www.deseretnews.com/article/865604071/Breast-cancer-early-detection-message-insufficient.html?pg=all

After Amy Robach, co-host of Good Morning America, shared her breast cancer battle with the world, she resolved, “I will start on a new journey, helping raise awareness about early detection.”

Amy, I’m glad you’re better, and it’s a nice thought, but unfortunately, it’s the same insufficient message about breast cancer that gets repeated over and over again.

When I was diagnosed with “incurable” (metastatic) breast cancer at age 37, I cringed every time someone told me I would make a great spokesperson for this oft-repeated public health message, “early detection saves lives”.
True? Yes, but it’s a slap in the face to someone trying to maintain any shred of hope after a late-stage breast cancer diagnosis. It’s like shouting to a person who tripped, “Watch your step!” Well, it’s too late for that advice. Extending your hand to help seems more appropriate.

After a year aggressively battling my “incurable” cancer, as my doctors called it, I have enjoyed two years of remission with no evidence of disease. My husband and four young children are grateful I didn’t give up hope, even though I did not detect my cancer early.

I still see the billboards – the ones that stabbed like a dagger through my desperate heart when I was first diagnosed. “Early detection saves lives!” Great idea, but for women who are younger, or have no family history of breast cancer, it’s unlikely they will be diagnosed early. Seeing that message everywhere doesn’t do them any good.
Other common public messages, regarding breast cancer, seem to be somewhat of a joke. I’ve seen catchy phrases like, “Help save the tatas!” Or “Save the boobs!” Because having a mastectomy is the worst thing that can happen when you have breast cancer…right?

Wrong. The worst outcome is that you can die from it! I won’t minimize the trauma for women who have a mastectomy, if everyone will stop minimizing a breast cancer diagnosis. It’s not just about boobs. You won’t die from breast cancer that stays in your breast, but if it spreads (which is what defines stage 4) then all of a sudden it’s considered incurable because the cancer has entered your blood stream and traveled elsewhere in your body – usually bones, brain, lungs, or liver. When that happens, the last thing you’re concerned with is whether or not you get to keep your “tatas.” At least the t-shirt with the message “Of course these are fake, my real ones tried to kill me” emblazoned across the chest is more accurate.

Don’t get me wrong, it is better to detect breast cancer early, but can we please start addressing those who did not catch it early, but who also want to live? These women are moms, wives, girlfriends, sisters, friends. Breast cancer is the number one cancer for women, and it’s no joke.

The current dialogue around breast cancer seems to be either that it’s hardly serious enough to be called cancer, or that those diagnosed with metastatic breast cancer are beyond hope. Neither is true.

My message for researchers is, “Spend more time trying to find a cure for metastatic breast cancer – the kind that can kill you.

To doctors, I say, “Don’t take hope away from any patient who wants to fight. Aggressive treatment has resulted in a cure for some metastatic breast cancer patients, but we want more.”

To everyone, I say, “If you are diagnosed with Stage 4 breast cancer, don’t accept a death sentence. There are survivors of metastatic breast cancer. That’s a fact. Don’t let anyone tell you otherwise.”

 

http://www.deseretnews.com/article/865604071/Breast-cancer-early-detection-message-insufficient.html?pg=all

Amazing article on Running and preventing breast cancer recurrence

I came across this article today posted by a breast cancer survivor on another website.  Naturally it caught my eye!  This study shows that regular running can help prevent breast cancer recurrence by about 25%!  I think that is pretty amazing!! Here are a couple of quotes from the article:

“Previous studies have shown that breast cancer survivors who meet the current exercise recommendations (2.5 hours of moderate intensity physical activity per week) are at 25% lower risk for dying from breast cancer. New research from the U.S. Department of Energy’s Lawrence Berkeley National Laboratory (Berkeley Lab) and reported in the International Journal of Cancer suggests that exceeding the recommendations may provide greater protection, and that running may be better than walking.”

“If I were a breast cancer survivor, I would certainly consider running or some other vigorous exercise over walking, and I wouldn’t just be doing the minimum, with the consequences and potential benefit being so great,”

Click on the link below to read the full article and read the statistics.  I have always personally felt that it is more important now for me to run than ever before, and that running is a key to maintaining good health going forward.  This study totally validates that notion.  There are also psychological benefits to running when you are going through a difficult challenge of any kind.  So get those running shoes out and lace up!!

http://www.sciencedaily.com/releases/2014/01/140129115205.htm

Optimistic Stage 4 Breast Cancer Study

Optimistic Stage 4 Breast Cancer Study

Written Apr 10, 2012 11:10pm

http://jco.ascopubs.org/content/20/3/620.full
This is the most hopeful study I have found about metastatic (stage 4) breast cancer. Please share this with anyone who has breast cancer. There is more hope for cure for stage 4 breast cancer than doctors usually communicate to the patients. I have looked for positive studies about metastatic breast cancer for the past year, and this one is my favorite!!

Video for the AF Half Marathon

Video for the AF Half Marathon

Written Jan 15, 2013 10:01pm

Denise’s Story

This is a little video clip that was made for the AF Half Marathon.  This is the half marathon I did last summer.  I like having a little video for me and my family as a memory of this event and what it meant to me at the time.
It is obviously a very brief little summary of my cancer story, and mostly focused on the race they are advertising, but that race really did mean a lot to me, so I was happy to be a part of their advertising for it.
I’m still feeling great and am training for this race again for 2013.  Just thought I’d post this to my caringbridge link for anyone who wants to view it.