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Denise Neish

Article for Ensign magazine

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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

Posted by | Articles, Chemo, Drugs, Running, Thoughts, Updates | 3 Comments

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

Posted by | Articles, Diagnosis, Running, Thoughts | 6 Comments

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!

Posted by | Chemo, Drugs, PET scans, Thoughts, Updates | 5 Comments

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

Posted by | Articles, Drugs, Running, Thoughts, Updates | 11 Comments

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!

I posted this on the New York Times “Well Blog” under “Conversations”

Posted by | Uncategorized | 4 Comments
Denise Neish from Highland

I was stunned with a stage 4 breast cancer diagnosis at age 37. I waited to have my lump checked, as my OBGYN advised, because I was pregnant. Our assumption was that it could not be cancer because I had no family history of breast cancer, I was young, and felt completely healthy.

By the time I was diagnosed in April 2011, the cancer had spread beyond my breast to 24 lymph nodes, two spots on my spine, and one on my pelvis. The doctors told me I was “incurable”.

I had four very young children, a husband who needed me, friends and family who loved me, and a strong desire to live for all of them. My prognosis was almost more than I could bear.

I am a lifelong runner, and I am also a member of the Church of Jesus Christ of Latter-Day-Saints (a Mormon). My faith is what strengthened me the most, but an outpouring of love from friends and family, as well as some tenacity gained from years of competitive running, helped me wage a good battle against the cancer.

My husband and I sought out the best doctors and treatments, and after several months of chemotherapy, several surgeries, radiation, and lots of drugs, my cancer retreated, and I was in remission.

I needed so much help with my young family during my treatment, but I was surrounded by many people who were willing to step in and help our family during this stressful time.

I believe we are in this world together for a reason. We need each other. Extreme challenges often bring out the best in people, and I am forever changed by the love and thoughtfulness of those who prayed for me, took care of my children, brought meals, and visited me.

I enjoyed two years of remission, gradually regaining my strength. Running had such a positive impact on my psyche, and I did a few half marathons. Prayer, and trust in God, gave me peace in my heart.

After two years of remission, I had a recurrence of the cancer in my right iliac bone. This was disappointing, but not altogether surprising. I am taking some drugs which will fight the cancer without harsh side effects so that I can continue to feel well.

I am more thoughtful about how I spend my precious time each day. Teaching my children, and looking for opportunities to help others, brings me a lot of joy. Improving talents, such as playing the piano, and writing, have lifted me. I am currently training for a marathon. Enjoying my marriage and family is my top priority because I believe our family will be together after this life.

I will do positive, deliberate things with my time, no matter how long that is. I believe I will live a long time still, and I am optimistic and happy. Cancer cannot take that from me.

Decisions and Goals

Posted by | Drugs, Thoughts, Updates | 5 Comments

The last few weeks I have been trying to figure out what I should be doing. I thought I had it all figured out after we went to Houston, because I felt really good about my plan to get on a CDK Inhibitor trial as quickly as possible. The frustrating part came when I tried to follow through with my plan and found that all options either took longer than I thought they would, or involved more travel on a regular basis than I would like.

I thought of going anywhere in the country to get on this trial as soon as possible, but there is a lot of monitoring when you are on a trial drug, and I would have to travel frequently for that. It didn’t seem worth the commitment for a lot of future travel when I would be able to get on the same drugs closer to home just a couple of months later.

My oncologist at Huntsman, Dr. Buys, did not seem overly concerned with the idea of me waiting another couple of months to begin treatment, but I did not feel comfortable with that idea at all. I had already waited two months, and did not want the cancer to spread any further.

I have to be off all treatment completely for 3 weeks before starting on the trial drug, and so I didn’t know if I should get on another drug if there was a possibility I could begin a trial soon. Also, taking certain drugs would make me ineligible to be on the trial drug. (There are very strict criteria that must be met to be allowed to participate in this trial).

Finally, after seeing all the wheels moving slower than I wanted them to, I decided that I needed to get on something while I waited for this trial. I still feel like it is the right thing to get on the CDK Inhibitor, and it will be available to me at Huntsman (so no travel) within the next 3 or 4 months, but until then, I am taking Tamoxifen. It does not make me ineligible for the trial drug, and it can be an effective drug, although it would definitely not be my top choice right now. But I do feel good about being on something that can fight the cancer while I am waiting. And I am glad I decided to not take any drugs that would make me ineligible for the trial, or that would require me to travel all the time.

The side effects of Tamoxifen are minimal. Basically my body temperature is hotter than normal, and sometimes I feel slightly dizzy, but not too frequently. Really, I feel great, to be honest! I’m still running, and have plenty of energy.

I have also spent the last couple of months reworking my psyche. I spent two years with some hope that I was done with cancer (although I always knew it was very likely to return sometime), but I liked having that possibility that it was gone forever. Now that it has returned, we know it was never completely gone. But honestly, not a lot has changed for me. I’m not starting some crazy treatment that effects my quality of life, and life is going on as normal.

My goal is to continue to feel great and take good care of myself, while focusing on the things that really matter the most in my life. Cancer is not going to steal all my attention and focus. I will go to doctors appointments when necessary, and take the drugs I need to take, but in between those doctors appointments, I am not going to be a patient all the time. I am a mom, among other things, and there are people who need me to be me.

I am a happy person. I am so grateful for the many many blessings I have in my life. I love my husband and my children so much, and they bring me so much joy each day. I have deep friendships and wonderful extended family. No ability has been taken away from me. I feel healthy, strong, and capable of doing many good things in my future.

I will let you know when I am able to start on the trial drugs, or when I have any updates or scans.

Thank you all for loving me and caring about how I am doing. I love each of you, and thank you for the comments and messages of encouragement I have received.

Trip to Houston for Some Answers

Posted by | Chemo, Diagnosis, PET scans, Radiation, Running, Thoughts, Updates | 10 Comments

After much planning, and arrangements that included my mother-in-law and several other great friends, Branden and I spent the week in Houston, at MD Anderson, trying to figure out the best plan for me in fighting my cancer recurrence.  We met with a doctor who was recommended to us by multiple people, and I feel like he lived up to his reputation.

When I first found that the cancer had returned I went to my old oncologist, Dr. Buys, at Huntsman Cancer Institute in Salt Lake. She really is wonderful, and has been an incredible partner in battling my cancer thus far. I don’t think I would have had two fabulous years in remission without her wise advice and genuine concern for me. But when we spoke with Dr. Buys, she didn’t suggest what we were expecting.

Let me briefly explain metastatic breast cancer. It started in my breast originally, but because it travelled to my bones, that means it has gotten into my bone marrow and found a good landing place in my bones where it grew. At first the cancer was in my spine and pelvis. After all the treatment I received three years ago, we no longer saw evidence of cancer in my body, but doctors mostly agreed that it would pop up somewhere again. We were hopeful that they were wrong, but knew it was unlikely.

Now, eradicating my one visible tumor with radiation should not be a problem. The problem is that now we know the cancer is still circulating in my bone marrow, blood stream, etc., and will land and make more tumors if we don’t treat it systemically (which means my whole body, not just the one spot). That was why we assumed that Dr. Buys would recommend chemotherapy again, but this time she did not think that was the best idea.

According to her, the chances are “miniscule” that I will completely eradicate the cancer, and my best bet right now is to try an approach with less side-effects than chemo so that I can continue to feel well. My type of cancer is stimulated by estrogen, and so trying a new estrogen blocker is one method of holding back the cancer for a while. Many women with metastatic breast cancer switch from one estrogen blocker to the next over time. One drug will work for some time, and when that stops working, sometimes another one will work. This method can go on for many years if you are fortunate, treating the cancer as sort of “chronic” rather than “terminal”.

I have read a lot over the past three years, and I know that this is the recommended treatment plan for someone in my position, but it has been hard to wrap my head around that. I asked Dr. Buys for her suggestion on a more aggressive treatment plan, such as chemo, and she said she would really try to talk me out of it. “Why would you want to do that to yourself?” were her exact words. I respect her opinion very much, but left her office feeling a bit disappointed. We decided to go to MD Anderson in Houston to get a second opinion.

It was a few weeks before I was able to get the appointment with Dr. Valero, but I felt the wait was worth it. I had some time to think about what Dr. Buys said in the weeks leading up to my appointment with Dr. Valero, and felt that if he suggested the same type of treatment as Dr. Buys suggested, I should listen. When he read my medical history and came to speak with me he started off by basically giving me a much needed pep talk.

Dr. Valero stated confidently, “You can live with breast cancer.” He let that sink in for a minute and then said, “You have lived with breast cancer for a long time now.” Just as I was thinking that three years wasn’t really that long, he said, “You had it many years before you were diagnosed, or it wouldn’t have been at the stage it was when it was discovered.” Then he asked me if I had any pain. When I said no, he said, “See?! You wouldn’t even know you had cancer now if we did not see it on your scan. You can run, you can take care of your children, and you can have an active lifestyle with cancer. So, . . . what we need to do, is keep you feeling well for a long time, and give you a drug that will stop or slow the growth of the cancer.”

He then told me that we are at a good place. My cancer is not causing me any problems, and we have several “tools in the toolbox” right now because I have not had many different drugs yet. After discussing some of the hormone blockers on the market right now, he recommended that I try to get into a trial of a new type of drug called a CDK inhibitor. It does not just block estrogen, but actually destroys estrogen receptors. It has had some amazingly effective results in early phases of experimentation. It is usually used in combination with an estrogen blocker, and so it can be a strong line of defense. Some early results are showing a much longer duration of time before it stops being effective than just the estrogen blockers alone. He said, more than once, that if he were in my situation, he would try to get that drug. The CDK inhibitor was something that Dr. Buys had suggested, but when she couldn’t find an open trial right away, she just moved along to the idea of an estrogen blocker alone. But basically they both were suggesting the same thing.

I trusted Dr. Valero’s advice, but could not leave without asking, “So, do we not ever try for a cure then at this point?”

Dr. Valero quickly raised his finger and said, “I did not say that!” Then he said, “If we have good success for a long time with this approach, and we see that tumor shrink, and no new tumors appear, then maybe we will zap it with radiation and hope to get rid of it completely at that point.” I liked his answer, even if he was possibly patronizing me a bit. It has taken me a long time to come to an acceptance of a treatment plan that is not with the intent to cure me, but I can accept this approach much easier if I am still allowed to hope for a cure at some point, . . . and I do.

After several phone calls, I am now likely able to get into a trial at Huntsman Cancer Institute of the CDK inhibitor, plus two other estrogen blockers with it, starting in September. I feel so good about this plan, and that was what I was praying for; something that felt right.

“Living with cancer” is something I have done for a long time, and I can continue to do it for a long time if necessary. And if “living with cancer” is necessary, you can bet that I will live the heck out of my life! I will be the healthiest person you know with cancer, and I will plan on setting some sort of record for the person who has lived the longest with metastatic breast cancer! ;) And really, I will just do my best to live with whatever comes my way, which is all that any of us can do anyway.

Thank you for those of you who helped with our kids while we were gone this week, and for all of you who have sent encouraging messages or who have prayed for us. I am grateful for so many truly wonderful people in my life, for feeling well, for a husband who loves me enough to take me all over for the best treatment, for my sweet kiddos, and for a relationship with my Heavenly Father. I am blessed.

Round 2

Posted by | Chemo, Diagnosis, PET scans, Radiation, Thoughts, Updates | 3 Comments

Friends,

We found out about two weeks ago that my cancer has returned. This time it is only in one small place in my lower back, in the iliac bone. Of course we are disappointed that I am no longer in remission, but this is not a huge surprise like the first time either. We have known that it was likely I would deal with this cancer again at some point. We just wished it would have been a longer remission.

Branden and I are still figuring out what my treatment plan will be. I feel great right now, and we are hopeful that I will continue to feel well during treatment. I may, or may not, do chemo. I’m almost certain that I will do radiation to that spot, but there are oral drugs that I may take rather than chemo. We just are not sure right now.

We have one opinion from my oncologist at Huntsman, but have decided that we will take a week-long trip out to MD Anderson in Houston, TX, which is arguably the best cancer hospital there is. We will be going the week of August 18th, (the first week of school for my kids) and I will have all sorts of tests while I’m there. I should come back with the best treatment plan for me, and some peace of mind that we have done our research and received multiple opinions from some well-respected oncologists.

We are really doing just fine. I am optimistic that I will be back in remission again soon. I thank you all for your love, support, and prayers in the past, and ask for your continued prayers. I am so fortunate to have, really and truly, the best family (on both sides) and friends. I am grateful for my faith, my husband, my children, and I feel strong and happy. My life is wonderful. My only complaint is that darn cancer! Hopefully we can get rid of it once and for all this time! I have learned that all I can to do is ‘do my best’. The rest is in the hands of my Heavenly Father.

I won’t begin any sort of treatment until after my trip next month to Houston. We will keep you posted on what we learn when we get back. And don’t worry, we really are doing fine, I just wanted to let you all know since I have shared this with you in the past. Love to each of you!!

Denise

My interview on Clearchannel Radio

Posted by | Articles, Chemo, Diagnosis, PET scans, Radiation, Running, Thoughts, Updates | 2 Comments

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/