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!

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.

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!

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.

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.

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 18^th, (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

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/

AF Canyon Half Marathon 6/21/14

Last Saturday I ran the AF Canyon Half Marathon. I have been preparing for it for a few months, but it was hard this year, because I had to train carefully. After last year’s race, I discovered that I had 3 stress fractures in my legs (presumably due to running while taking Zometa, a bone strengthening drug which, ironically, can make bones more susceptible to fractures). I have only been able to run about twice a week, or else the pain in my femurs is too much, and I fear a stress fracture.

I have definitely not been running as much as last year for this race, but strangely, I continue to feel stronger the farther away I get from all my treatment. It seems odd to still be recovering, because I have been in remission for two years, but I’m certain that’s why I feel better than I have in a long long time.

My pre-race sleeping and eating routine was well planned. I woke up at 3:55AM to make it to the bus pick-up at 4:30. I arrived at the top of the canyon by about 5AM; one hour before start time.

The AF Canyon Half Marathon is put on to raise money for cancer patients who can’t afford treatment. I love that all the money goes to that cause. This has been a special race for me because it was the race I trained for during my treatment. I ran it right after I found out I was in remission. It was a difficult challenge to finish such a long race during that time, but it was mentally and physically great for me to have this goal. My radiation nurses were the ones who referred the race marketing guy to me, and he asked me to speak at the top of the canyon before the race started two years ago. They also made a little video about me for the race website.

So many people run in honor of, or in memory of, someone they love who has battled cancer. Many cancer survivors also run this race. The speaker at the top of the mountain this time happened to be the first doctor who did surgery on me. She said that she was running in honor of her patients. I haven’t seen or spoken with her since the very beginning of my battle with cancer, and I made my way over to her right before the gun went off.

I said, “You have done surgery on me, . . . twice.” She said that I looked familiar, and I told her my name. I said that I wanted her to tell her patients with stage 4 breast cancer that there are some who survive. I told her that I had cancer in my spine and pelvis, and that I had now been in full remission for two years. She had tears in her eyes and thanked me for speaking with her. She said that she may have some of her patients call me if that was okay. I said, “Of course!”

The race was beautiful, as always. The air was crisp and cool as we followed the river seven miles to the mouth of the canyon. People wore shirts with pictures of their loved ones with cancer, and there were signs placed alongside the road with messages of hope for specific cancer patients. I stopped at the second water station at mile five, and continued to where I knew Branden would be waiting for me.

At 7.5 miles we exited the canyon, and there were several people there cheering on the runners. Branden met me there and joined me for the rest of the race. I discovered that I was making better time than I thought I would. My original goal was just to be in the 1:50s, but I soon realized I had a chance to break my time from last year, and that became my new goal. I felt strong through mile 10, then I was just trying to keep moving for the last 3.1 miles.

Branden encouraged me a few times, and I was glad to have him with me, but I was so tired that it took all my focus to just put one foot in front of the other. I was still trying to break my time, but I was getting grumpy about it! Near the finish Branden stopped since he wasn’t really in the race, and I looked up at the clock. I was going to beat my previous best time by over a minute! I pushed myself to finish strong, and made it through the crowd of people to reunite with Branden. I was all smiles after I stopped running.

I love this race, and it made me really happy to break my time from last year. I am just so happy I can run, and thankful to be getting healthier and stronger all the time. I have so much to be grateful for!

Thank you to everyone who prayed for me to have a clear PET scan. I got the results today, and it all looks good for the most part. But I do wish these things would be more conclusive. There does not appear to be cancer anywhere, but there is one little spot that is questionable. It is in the sacro-iliac bone in my lower back. I have to go back for another scan in two months to follow up on it.

To be honest, I am almost certain it is okay. I know that it is possible for the scans to show stress in the bones, and I did a hard run outside on Saturday (2 days before my scan), so my guess is that is why there appears to be some action going on in that area. I’m not just saying this, . . . I really do think it is nothing.

We have dealt with a questionable PET scan before, and everything turned out fine. It just means that I will have to wait until July to be 100% confident that my body is as healthy as it feels.

Until then, I’m pleased to announce that I have now been in remission for 2 years, and I will assume that is going to continue until I hear otherwise. All is well!!! Love you guys!!!

PET scan results in!

Written Nov 5, 2013 9:07pm

Stress fractures!

Written Sep 20, 2013 12:00am

Great News!

Written Jun 11, 2013 1:05am

May 2013 PET scan results

Written May 17, 2013 3:38pm

I had my 6-month PET scan last Friday and this morning got the results.  Overall it looks great, but it is not quite as definitive as I was hoping.  Basically there is a lymph node on my left side of my neck under my jaw that is a bit “iffy”.  It has a slightly higher metabolic rate, but it is probably just “reactionary” which means that it is because of a slight infection in my body.  The oncologist thinks it is probably nothing, but wants me to do another PET scan in 3 months just to follow up on it.

I think it is probably fine too.  I feel great, and am getting ready for a half marathon in a few weeks.  Honestly, I have just learned to live with a bit of uncertainty, basically thinking that we probably got rid of all the cancer, but never really knowing for sure.  So this is not something that is any different than that!!

I am happy about everything else in my body looking great, and am not too worried about that lymph node.  I’ll assume it is okay unless I find out otherwise in August.  And if that is the case then we will cut it the heck out of me and be done with it!!!  

Love you guys!  Thanks for the prayers!

Video for the AF Half Marathon

Written Jan 15, 2013 10:01pm

Denise’s Story

PET scan results Nov. ’12

Written Nov 7, 2012 4:02pm

New PET scan date

Written Oct 31, 2012 5:49pm

Next PET scan scheduled

Written Oct 24, 2012 11:05pm

Remission!!

Written May 10, 2012 7:05pm

Update

Written May 2, 2012 10:37pm

Written Apr 4, 2012 5:06pm

Patience

Written Mar 20, 2012 10:50pm

Recovering well

Written Feb 24, 2012 11:10pm

Surgery

Written Feb 16, 2012 11:54am

Done with Radiation!

Written Feb 3, 2012 10:24pm

Radiation and Turkey Trot

Written Nov 25, 2011 7:33pm

Done With Chemo!!!

Written Nov 6, 2011 10:42pm

Just one round of chemo left!!!!

Written Oct 31, 2011 10:33pm

Catching up

Written Oct 14, 2011 11:07pm

The light at the end . . .

Written Oct 3, 2011 10:31pm

Halfway done with this half of chemo! =)

Written Sep 23, 2011 10:37pm

One more down!

Written Sep 10, 2011 10:05pm

Lovin’ the Taxol

Written Sep 4, 2011 10:06pm

Chemo at last!

Written Aug 27, 2011 11:05pm

Feeling good, but no chemo!

Written Aug 19, 2011 4:50pm

2 down, 10 to go!!

Written Aug 13, 2011 12:04am

Starting chemo again, and the run

Written Aug 7, 2011 10:59pm

Birthday Extravaganza!

Written Jul 31, 2011 12:40am

Home and feeling well!!

Written Jul 26, 2011 11:24pm

Birthday at the hospital!

Written Jul 19, 2011 11:51am

Home

Written Jul 11, 2011 11:11pm

PET scan results

Written Jul 8, 2011 11:02pm

In the hospital

Written Jul 7, 2011 12:51am

So this is the tough part!

Written Jun 28, 2011 10:46pm

Quick update

Written Jun 23, 2011 11:10pm

Thanks for all the support!

Written Jun 21, 2011 11:09pm

Sick

Written Jun 20, 2011 11:10pm

More energy

Written Jun 17, 2011 10:48pm

First Three Rounds

Written Jun 15, 2011 12:07am

Letter to Family and Friends

Written Jun 14, 2011 11:55pm

This is a letter I sent to my family and friends a couple of days before I started chemo about 5 weeks ago.  We had made it through our move to Utah, and were getting settled in.  I had been too emotional to talk about this to most people, but finally wanted to unburden myself before beginning treatment by telling everyone I should.  I felt like it would help me mentally “get my game face on” for chemo.  I thought that writing this, and getting it out there, would help me toughen up a little for the battle ahead.

Dear Friends,

I have recently been diagnosed with Stage 4 breast cancer.  I have had surgery, and will begin chemotherapy on Friday.  Some of you know about this, and some of you don’t.  I am sorry to tell you in this blog if you are hearing about it for the first time.  It has been hard to tell everyone personally all about this, and I took some time this evening to write to my family and I decided to forward that email on to all of you so that you can know what is going on with us.  I love each of you and wanted to share this with you.  Here is the email I sent to my family:

Okay, so I know I have needed to write an email and update you guys on what is going on, etc.., but it has been extremely hard with moving and doing doctor’s appointments, and taking care of our family all at the same time. Plus, it has been good to have a little time to get some perspective on things.

So we went to Huntsman last week, and decided to stick with them (as I thought I would). My doctor is “Dr. B”. She is the medical director for the breast cancer clinic of Huntsman, so she should know her stuff. She also was very kind and a good listener, and had good thoughtful information to give.

I wish she would have had some different diagnosis for me, or a much better prognosis, but my prognosis is still the same. I am not saying this to be negative, but just because I have been told this several times now, and I think it is because they try to be realistic or something with patients. The best description she gave about stage 4 breast cancer was that at some point cancer spreads too much for them to permanently get rid of it. It is possible that the first round of chemo could reduce or even get rid of the cancer that we know about so that it does not even show up on a PET scan, but they feel that on a cellular level it will not all be gone, and that at some point it will come back somewhere. It is very positive if we can “get rid” of it this first time though, because it could be a few years before we deal with anything again.

My course of treatment will be very aggressive. We will do 8 rounds of chemo, two weeks apart. This makes it more powerful when you reduce the time in between rounds. Most places only do it 3 weeks apart, but they have some good drugs to help my white blood cell count go up between treatments so that I can handle the higher intensity of this kind of chemo. I will also have plenty of anti-nausea drugs at my disposal, and they feel certain that I should not be vomiting or anything like that throughout treatment. Fatigue will probably be the biggest issue.

After chemo, we will radiate the areas where I had the lump, and lymph node area, as well as the three areas that have advanced to my bone. This can really help, and can even alleviate pain in those areas. (Although I don’t really have any pain there, just some sensitivity.)

After that I will probably have my ovaries removed, and begin an anti-hormone regimen. This can be a very effective treatment for cancer that has spread to the bone. In fact, one of my options was to begin with this treatment and do chemo later.

I may take Herceptin to counteract the HER-2 positive result I got for my type of cancer. But there is some dispute about that, because I got another test back that says that I am HER-2 negative. That would be good if I was negative, but even if you are negative (it is a sliding scale) you can benefit from this treatment, so we will request to get it anyway. I think Dr. Buys is open to that even though it is a 100,000$ treatment!

I will be on the hormone suppression therapy for the rest of my life, and we will do frequent PET scans to check for cancer and treat it as needed.

So on to how we are feeling about all of this. I say “we” because Branden and I are definitely in this together, and have talked at length about all of this. We have both been very emotional at times through this, but we are also beginning to get more hopeful and trying to be strong for the battle ahead, come what may.

There are some people (1-3%) who actually beat Stage 4 breast cancer long term. But the doctors don’t say it’s curable. There are also those who fight a good fight for many years (20-25)but only about 10% live past 10 years, and about 20% live past 5 years. These are not good odds, but I am similar in many ways to those who have either been cured, or who have lived many years.

I am young, healthy, I eat right and exercise regularly, and I am not having any symptoms to begin with. I am optimistic, and will be tough throughout treatment. (Some people simply wimp out of treatment at some point and give up, and that is not an option for me.) My cancer is stage 4 because it has spread beyond the lymph nodes, but I would say “barely”. It is only in three spots, and it is better that it has spread to the bone than to any of my organs. The types that occasionally beat this or live for a longer time are usually ones that have spread to bone only. Also, Branden and I are being very proactive in seeking out the latest and best treatments for this. I am preparing for the side effects in all the ways I can, and I am actually wanting to get going on this treatment. BRING IT ON!!! I have a wonderful husband who is the love of my life, and 4 beautiful children who are young and need me for a long time still. Branden and I started this family together, and I am determined to raise these children with him! I believe that it is possible to beat this cancer, and if anyone can, I believe I can, if it is in Heavenly Father’s plan. I am tough physically, spiritually, emotionally, and I am surrounded by love and have the best support around me possible.

This whole thing has turned my world upside down. I have always been pretty introspective, but it is another thing to have my mortality hanging by a thread. I know that we are all mortal, but I don’t normally think about it too often. It is a good thing to think about, because it makes us want to live our lives in the way that we really want to. I don’t want to go on a big European vacation or anything like that, I just want to raise my kids in the best way I can, have a happy relationship with Branden, and do some good in this world. I want to enjoy Alec, Lily, Max, and Macy more, and I want to actually follow through more with some of my good intentions. I want to do whatever Heavenly Father has planned for me. I don’t feel like my mission in life is complete yet, and I feel like I have much good I can do with the rest of my life. I think this will just be a really good refining process, and I know we all have to go through difficult things in life to help us come closer to what God wants us to be. I love my Heavenly Father with all my heart, and I trust in Him completely. I love each of you reading this email, and I will do my best to be brave through all of this. I feel that I have many more years to come in my life, but I just wanted to share some of these thoughts with you.

Thank you for all your love and prayers. A lot of good can come from difficult things, and I see a lot of that already in the outpouring of love and kindness from each of you and from many more people around me. It is a good example to me.

Love,

Denise