Author Archives: Denise

About Denise

Denise Neish, married to Branden, mother of four amazing kids, runner, writer, track coach, speaker, cancer survivor, happy person!

Perspective

When my oldest son, Alec, was three years old, he called me into his room one night, a little scared, and said, “Mom, will you turn off the dark?”

It took me a second to realize that he was asking me to turn on the light. I don’t know if he imagined there was a switch on the wall that said, “dark”, and we switched it on at night and off when we wanted to illuminate the room. I guess no one had ever explained it to him before.

Another time, when he was about the same age, we were driving in the car, and Alec got super excited about a dog he saw outside running ahead of his owner on a leash.

“Mom!”, he shouted, “look at that dog! He’s taking his lady for a walk.”

I laughed so hard about that one. That really was what it looked like, and is probably exactly what the dog thought was happening.

As adults, it’s sometimes funny to us when kids see things differently. Often we think there is only one “right” perspective. I don’t mean to muddy the waters here. There are things that really are either true or false. Facts are facts, but if we are looking at the same set of true facts, how we see those facts can change everything. Sometimes we can misinterpret facts to come up with conclusions that are not accurate, but often we just interpret facts differently than someone else, and both perspectives are equally true and valuable. Making meaning of the world is personal, and as varied as all the people on this earth.

For the past nearly seven years I have been battling cancer. It’s the kind that will not go away unless there is some new breakthrough. I am being treated to extend my life, and try to maintain quality of life in the process. I’m a mother of four young children, and I have done my best to do my part. I exercise, eat healthy, get enough sleep, and my husband and I have navigated and researched my treatment options diligently. For most of the past few years I have felt quite well, and I’m grateful to have far exceeded my original prognosis of about two years. I have completed several half marathons, and even one full. Other times I have been hospitalized, or otherwise dealing with side effects from treatment. I have kind of prided myself on keeping things fairly normal for my family, but recently things have gotten a lot tougher.

For the past year, my cancer has been in attack mode. We have not been able to stabilize it as before. For years I have gone from one treatment to the next, with close observation, and each treatment has given me some time to live my life before losing its effectiveness. Since the cancer spread to my liver, just over a year ago, it has spiraled out of control. I have not found anything that has worked longer than a couple of months. We decided I needed to get back into IV chemotherapy last May. I am now on my third chemotherapy drug, because the first two have already failed me.

The drug I am currently taking seems to be working so far, but it is rough. I got so extremely sick from it after my first dose that I was vomiting, unable to eat for a couple of weeks, and was constantly nauseous and tired. After a few weeks off to recover, I started again at only half dose. Even at half dose it’s a challenge for me to handle the side effects.

I am not someone who gets discouraged easily. I don’t give up easily either. I will admit that I’m adjusting to losing that bounce in my step though. I have been frustrated about how I feel, and often wonder what that means for the future. It’s easier to be strong when there is a finish line, but my current treatment options are all chemo options, and there is no finish line in sight except for the end of my mortal life. I’m not ready for that yet, and so I need to be willing to endure the treatment options available to me.

Truthfully, I don’t want to just be enduring life, I want to enjoy it. So, the question I ask myself is, “how do I find happiness right here and now?”

I don’t know a lot of things, but I have learned a thing or two from battling for my life these past seven years. First, some things do just need to be endured for a while. That is part of life. We are not always going to be happy about how things are going, but we can still move forward each day with some hope that tomorrow will be better.

Second, I feel the most sorrow when I am thinking of myself. When I think of others more, I am excited or happy for opportunities in their life, and it motivates me to look forward to seeing their happiness and success. If I need to cheer someone up, that focus on what I can do for them somehow lifts me. Spending time with my husband or children is my best way to gain perspective and put aside my complaints, with the added benefit of enjoying the ones I love the most.

Third, when my energy is limited, I need to be more thoughtful about how I use my time. If my body needs a two hour nap in the middle of the day, then when I am awake, I need to get the important stuff done first. Sometimes that involves everyday chores to keep our family functioning, but it can’t be just that. I need to make time to write, play piano, walk on my treadmill while listening to uplifting talks or music, or meet up with a friend. If I am trying to accomplish something, like submitting my book to publishers, or working on a project, I feel good when I make time for those things on a regular basis. It gives me purpose, and that is vital when so much is out of my control.

Fourth, and most importantly, I need to feed my spirit every single day. This means different things for different people, but for me, prayer, scripture reading, visiting the temple, and listening to inspiring talks, lift me and strengthen me on a deeper level than other positive habits I may enjoy. It’s not the kind of thing I always make time for, because none of those things are necessary for making it through any given day. That’s the tricky part. Those habits take time, and the return isn’t always immediate. Sometimes I feel very lifted during the act of “feeding myself spiritually”, but other times it is like adding little drops of oil to a lamp, as the wise virgins in the New Testament. I may not need to light my lamp right away, but when I need it, I am so grateful if I have filled it by adding spiritual “drops” of oil on a regular basis. When I focus on the life of my Savior Jesus Christ, I give Him the opportunity to heal my spirit. He suffered both body and spirit, and therefore, is the only one who can truly know how I feel and what I need. When I think of Him I feel strengthened, happy, and even grateful and loved in a very real and tangible way.

Christ said, “Come unto me, all ye that labour and are heavy laden, and I will give you rest.” I have genuinely felt that “rest” many times over the past few years. I have been happy right in the middle of sorrow, and felt courage take over when I was afraid. I have felt an increase of love and joy in my family, and I have been so very grateful and aware of what I have, even when I want something so badly that is not going my way. Yes, there have been times when I have not been my best self, but I have seen improvement in myself, and that is rewarding.

I take comfort in the scripture that says, “Thy days are known, and thy years shall not be numbered less; therefore, fear not what man can do, for God shall be with you forever and ever.” We just can’t control some things, but if we put our trust in Heavenly Father, He will hold our hand through it all and we have nothing to fear in the end.

I can look at life from the perspective that I have terminal cancer. I am not winning the battle, and there is nothing I can do about that, and I feel cheated of future time with my family. That is one perspective. The perspective I choose is: I have a happy marriage with a wonderful husband to whom I am sealed for eternity in the temple. I have four beautiful and happy children who are becoming just what I had hoped they would become. I feel confident in a happy after-life, and I know that eventually my whole family will be there with me. I have friends and am shown love from others every single day. I am here right now, and I can do what I choose to do with my time. Out of those two true perspectives, that is the one I have chosen.

 

Crazy! This was on TV!

I was contacted shortly after posting my head-shaving videos on youtube by producers of “Right This Minute”. They asked if they could use my videos and put it into their show. At first I thought it was just an online thing, but it was on national television. I thought they did a nice job of putting it together. I will say they gave me a lot of credit, and may have been exaggerating a bit with their description of my “extremely” healthy habits, etc. I appreciate their kind words and my kids loved that they were on t.v.!

“>

Would You Let These Guys Give You a Haircut?

I have been doing chemo again for the past few months. My hair is not completely gone, but we just shaved it off before it got too thin. Chemo is working really well. The cancer was growing in my liver and bones. My liver was looking pretty bad, but Taxol has been doing the trick. My tumor markers have been dropping quickly, so that’s great! I will continue on chemo for as long as it is working, but I’m happy to report that it is working well, and I am still feeling pretty darn good.

Article for Ensign magazine

I wrote this article 3 1/2 years ago, when I was in remission, after the craziest year of my life battling cancer. I sat down one day and decided to record a few of the many ways in which I recognized that God helped me through it all. I wanted to remember for myself, and I wanted my children to know, that there was no doubt in my mind that Heavenly Father walked with me every scary, difficult step of the way. After I wrote this I sent it to the Ensign, a magazine that our church publishes, with the thought that possibly my story could help someone who might need to hear it. Then I forgot about it.

Three years later, over the summer, I heard back from the Ensign, letting me know they wanted to publish my article. I didn’t even remember I had sent them anything! I reread the article, made a few changes to make it current, and sent it back. They published it in the January 2016 Ensign that just came out.

It makes me feel good to be able to testify of something that I know. God lives. He loves us. He will help us travel our course in life if we turn to Him. Sometimes you experience something that makes this so clear and obvious. For me, my health challenges have been that type of experience, and I sometimes wish everyone could know what I know, and that it could bring them the happiness, peace, and strength that it has given me. Some may call that patronizing, others may say that in my desperation I needed to believe, and so I did. For me, I really just love people and am grateful to know that God is real, and I hope to pass that along to benefit others who feel as hopeless and overwhelmed as I did for a time.

Most readers of the Ensign already believe the same as I do, but thank you for allowing me to share, and please pass on to anyone who may benefit from it.

https://www.lds.org/ensign/2016/01/supported-in-our-trials?lang=eng

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.

Hooray for New Drugs!

I continue to feel well since my recurrence of cancer in my right iliac last summer. At that time, and after much research, and flying to Houston for a second opinion, we decided that I needed to get on Palbociclib, a new drug that was still in it’s final trial phase. I was a perfect fit for this targeted therapy, which is just a daily oral drug with minimal side effects, and so I began the process of trying to get on the trial.

I decided to take another drug while I went through the process of getting on Palbociclib, because I wasn’t sure how long it would take, and I didn’t want to go untreated for too long. I’m glad I did, because several months later, I still wasn’t on Palbo, and I was becoming more concerned that I would not be able to get on it.

Recently, I was so happy to hear that Pfizer had received FDA approval for the drug I needed. I assumed that meant I would be able to get it because my doctors recommended it for me. I was disappointed to learn that they had changed one little criteria for receiving Palbociclib. It was only for women who had not been on prior endocrine therapy, which ruled me out. I looked for alternative routes to getting access to this drug, and kept running into brick walls.

I went into Huntsman Cancer Hospital a couple of weeks ago for a PET/CT scan and was relieved to find that I still just have that one little spot of cancer, and it does not appear to have grown. Everything is stable, so that is great! I was so happy that my interim drug has been working. It helped me to not feel so anxious about getting onto Palbociclib right away, but I still wanted to eventually get on it.

Well, last week it was confirmed to me that holding out for Palbociclib was the right thing to do, because, surprisingly, my insurance decided to pre-approve me for this drug. I couldn’t believe it! It would normally cost about 11,000$/month, but now it will cost me 5$/month. I think we can swing that! :) I am grateful that despite the long wait, I am finally on the treatment that I felt right about from the beginning. And the waiting has not caused the cancer to grow.

Today I got a blood test, and then picked up my new fancy drugs. I will take two drugs in combination. The Palbociclib alone costs about 500$ per pill, without insurance! I take it for three weeks, then I will take a week off, so that my white blood cell count won’t get too low. The other drug, Femara, I will take daily. Palbociclib is a chemo drug, but the side effects are usually minimal, and it should be something that I can take for a long time, as long as it is working for me. I am hoping that I will continue to feel as well as I currently feel, which is totally great!

Thank you for those of you who continue to ask how I am, think of me, and pray for me and our family. We really are all doing quite well right now and just enjoying life. I feel really grateful for all that I have, for the happiness of my family, and for my health and strength, and the great treatment that is available to 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!