Decisions and Goals

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

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

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

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

AF Canyon Half Marathon 6/21/14

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!

Breast Cancer ‘Early Detection’ Message Insufficient

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

May 2014 PET scan results

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!!!

3 Years!

So I guess it’s my “cancerversary” today. It was 3 years ago today that I was first diagnosed with breast cancer (3 weeks after that we discovered it was stage 4). It seems like a strange thing to celebrate, but really, I am just feeling contemplative today. Grateful to still be here, and incredibly grateful to be in remission. I celebrated by running 6 miles on my treadmill today.

Next month seems like more of a legitimate reason to celebrate because (assuming my PET scan in May goes well) I will celebrate two years of remission.

But a “cancerversary” might be a good excuse to get a chocolate cake or something? Plus there’s the fact that it’s Spring Break!!

Read at my Grandma Howard’s funeral- Her own words

I don’t mind saying that I had two amazingly wonderful grandmothers!  My Grandma Howard (Doris Jean Howard) was a spirited, yet always proper, country girl!  She lived in Missouri her whole life and was raised by her loving grandparents after suffering abuse as a young girl from her step-father.  She married my grandpa at the age of 17 because he was going off to war.  My grandparents were the happiest couple I have ever known.  They were poor, but made such a happy life for themselves.  They were fun and wonderful parents, and grandparents, and were loved by everyone in their little community.  She was a seamstress her whole life, working from home, while my grandpa had his own garage across the street from where they lived, where he fixed cars.

My grandparents loved being together.  They talked forever on their front porch, or over coffee in the morning, before my grandma scuttled him out the door for work, where she came and visited him frequently.  They fished, played cards, went on road trips, entered photography contests together, and she always kept a journal.  I came across this today and wanted to share it.  I have always loved this particular journal entry of hers.  At the age of 75 she wrote it, and we read it at her funeral four years later:

March 2002

I haven’t written for a long time.  I have now lived three quarters of a century.  That doesn’t make me so very old but I realize there are things I would have liked to do that are now closed to me.

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