Friday, July 15, 2016

Six-Year Update

I get annoyed when the cancer-survivor blogs I follow don't give occasional updates to let me know how they are doing. But it is common to move on after a cancer diagnosis, and try not to look back.

So for those who so faithfully read my blog and supported me through cancer treatment, I've committed to update this blog once a year, on my cancer-versary. June 10th came and went this year and I never got around to blogging. Late is better than never!

I quit taking Tamoxifen last July. It wasn't worth it. I thought, "If this is my life, I'd rather be dead." I know that sounds dramatic, but if you reach that point, the risk vs benefit debate becomes amazingly clear. Why take a (possible) life-extending drug if it so decreases your quality of life that life isn't worth living? Going off of it was extremely difficult, causing intense mood swings that lasted about 8 months. It's leveled out now and I feel much better.

I've also been taking a sub-therapeutic dose of Effexor to help with the side-effects (and withdrawals) of Tamoxifen. If you can make it through the headaches and dizziness of the first week or two, Effexor is amazingly helpful in reducing many of the random side effects of Tamoxifen. Unfortunately, going off of it also causes intense headaches and dizziness. I'm still trying to get off of that one.

This year I've spent time grieving. Or perhaps I've just been able to identify the grief that I felt all along. I've grieved over the fact that I will likely never feel the way I did before cancer. I've grieved over the changes in every single precious relationship in my life. And mostly, I've grieved over the years I missed with my kids. I was there, but I wasn't engaged. I didn't enjoy them. I couldn't teach them like I wanted to. And there are so many things that I just don't remember. I'm beginning to see the effects my weaknesses have on their lives. It makes my heart ache.

My marriage is a constant struggle as we try to redefine our roles and figure out how to connect in new ways.

Besides that, life is good. Cancer has found it's place - as just a part of our lives and not the all-encompassing giant it once was. It has changed us. It has shaken us. It still defines us in ways…but it doesn't wholly define us. Life goes on, and we think about it less and less.

All three of the kids are in school and doing fantastic. I've been working part-time and trying to find my place in the world. Life doesn't look the way I expected it to, so I'm rewriting my expectations. It just takes time, and patience, and a whole lot of trial and error.

Dear readers, I am forever thankful for your love and prayers. I cannot imagine what this journey would be without you. Blessings!

P.S. Breast cancer is an all-out assault on ones body image and identity. I often wonder how my deformations will shape my children's view of women's bodies. One thing they will never learn from me is shame or disgust. So we approach things lightly, and have fun, even if we are a bit weird. There are no "rules" or even "norms" that go along with a cancer surgery. So we make our own.
Warning: You will see my partially-naked torso in this video (turn up the volume)…

video

https://youtu.be/9xW3sYsrF74

Tuesday, June 9, 2015

Five Years!

 

This week is my five year cancer-versary! It's been a year and a half since I last blogged here, and I feel like I owe some of you an update (especially those who are far away). Yet, I sit here staring at my computer and I don't know what to say.

Five years is a significant mark. Most cancers recur in the first five years after diagnosis, so we tend to rejoice when we hit the five-year mark. Statistically, it's great news. Yet, I've now seen enough women with post-five-year recurrences to know that I'm never out of the woods. Life is unpredictable and fleeting.

Here's a brief update of my life and my victories…

Doctors Appointments

I see my oncologist every six-months…which will soon change to annual visits. I don't feel the anxiety I used to feel at each appointment. I think the significance of this is that cancer no longer dominates my thoughts. It doesn't define my life the way it used to. I don't live constantly battling fear of recurrence. If it happens, I know that God will give me everything I need to be victorious, in life or in death.

My New Normal

I've finally adjusted to my "new normal." I fought hard against the idea of a new normal. I wanted my life back. But I've adapted and accepted my life for what it is. I've learned to be content and make the most of the energy I have. I'm very, very thankful for many of the changes in my life and in my perspective. I wouldn't trade them for all the strength in the world.

Tamoxifen

I did a little experiment and went off Tamoxifen shortly after my last post about it (almost 2 years ago). I took a six month break, and honestly, it was very difficult. I had intense mood swings that just about destroyed my life. I went back on it, but adjusted my dose and started taking another drug to help with the side effects. I'm handling it much better now, but still live with an extreme energy deficit.

A New Start

We moved! We bought a house about 5 miles from our old one. Our new house is bigger and beautiful. But more than that, it's different. It's a fresh start. It's a place to put the past behind us and create new memories…ones that don't include months of sickness and grief and struggling. My kids don't remember what I was like before cancer. They barely remember me going through treatment. The boys are both in school at a local STEM Academy and Eva starts kindergarten there in the fall.

My life is not at all what I envisioned it would be. But I've found beauty in suffering. I've learned that lasting happiness and satisfaction are found only in God, and not the circumstances of our lives. And there is so much freedom in that, in letting go of all of our plans and aspirations and yielding to the One who holds the world in the palm of His hand. His plans are so much better than ours.

Sunday, October 27, 2013

Metastatic Breast Cancer

This morning, on the front page of the Life section of the Idaho Statesman is a piece on metastatic breast cancer. I encourage you to read it. It is an amazing work by my friend, Chad.

Chad has a unique ability to empathize and when he writes a story, he jumps all the way in, seeking to understand fully the stories of those he writes about. He doesn't do it for profit or to make a name for himself. He's not driven by ambition, but rather by a true heart to help...to help those battling the disease and to help others understand. He's a voice, advocating for these women and painting a picture of the rawness and beauty found in their stories.

I've read few things that adequately and accurately represent the battle these women face. Although I'm not currently facing metastatic cancer, the possibility of it looms over me constantly and these women's stories overwhelm me as I think about the courage and the strength that is required of them. They deserve nothing less than extreme admiration.

Here is the link:

http://www.idahostatesman.com/2013/10/27/2836432/putting-the-realities-of-cancer.html

I get easily overwhelmed by the number of people I hear about regularly that face cancer and hardship. Sometimes I just want to cover my ears, close my eyes and pretend it isn't real. But it is real. And as much as I wish it wasn't, I have to force myself to look it right in the face and do whatever I can to help. So, if you could join me in saying a quick prayer for the women in Chad's article and the following people, I would greatly appreciate it:

1. My friend Maria is battling a rare form of cancer. She needs prayer. Cancer invades your life. As if treatment isn't difficult enough, it affects your finances, your family (and all relationships for that matter), your job, etc. Please pray for her!

2. I have a friend who asked for prayer for someone she knows: a 27-year-old woman who is 6-months pregnant and just diagnosed with invasive breast cancer. I can only imagine the difficult decisions she has to make right now. Please pray for her as she deals with this diagnosis and faces treatment in the midst of giving birth.

Thank you!

Thursday, June 27, 2013

The Tamoxifen Dilemma

***To avoid any alarm that might be raised by the description at the beginning of this post, I want to assure you that I am still cancer free.***

A Bit of Cancer Education:

I haven't written in much detail about my treatment. I never wanted to focus on it, nor my chances of survival. I often hear people talk about cancer in a way that indicates a lack of understanding, so I'm going to try to clear some things up in simple, laymen's language (meaning I'm not a doctor).

First of all, there are many different types of cancer and each has to be treated with a different regimen. The term "breast cancer" applies to at least ten different diseases. When someone has a breast cancer diagnosis and they find the cancer has spread to the bones or the brain, it does not mean she has "brain cancer" or "bone cancer." It means she has breast cancer that has metastisized to the brain or the bone. If they do a biopsy of the brain tumor, they will see the tumor has all of the characteristics of the primary breast cancer. The pathology is identical. Although it does happen, it is rare for a person to have two types of cancer at the same time. I often hear people say that their friend has bone cancer and liver cancer and lung cancer when what they really mean is that they have breast cancer that has spread to all those areas.

With breast cancer (and many other cancers) the primary treatment is to remove the cancer. Assuming the cancer hasn't already spread to other organs, after surgery the patient is officially cancer-free. At that point, everything else: chemotherapy, radiation, targeted therapy, and hormone therapy are all attempts to prevent a cancer recurrence. Sometimes cancer cells will travel to other parts of the body and lay dormant (unnoticeable by scans) only to make a reappearance years later, often coming back with a vengeance.

[I'll add briefly that this is one common problem with alternative treatments. They might appear to be effective at first, but when the cancer comes back, it is out-of-control and too late to treat something that could have been cured by traditional medicine. I'm not opposed to all alternative treatments, but I'm not a big believer in them for treating my type of breast cancer.]

The purpose of each type of treatment is the same: to reduce the risk of recurrence; to get the percent-chance as low as possible. Chemo attempts to kill any cancer cells that have spread to distant parts of the body. Radiation attempts to prevent a local recurrence (in case any cells were missed during surgery). Targeted therapy attacks a certain protein within the cancer cells. Hormone therapy essentially starves cancer cells.

I never wanted to know my chances, statistically speaking. Statistics are pretty meaningless to me. But to illustrate how this works, I'm going to make up some numbers:

Let's say with surgery alone I have a 65% chance of recurrence. I do chemotherapy and it lowers it to 50%. Then I endure targeted therapy and radiation and now I'm down to a 30% chance of recurrence. Hormone therapy almost cuts that in half to 17%. Those odds aren't great, but they're not terrible. But there are no guarantees. It's a gamble. (Remember these numbers are completely fictitious). Since the statistics are only averages arrived at through studies of many people, it is difficult to know if one's individual cancer is responding to the treatment.

Since I did some chemotherapy before my surgery, I was fortunate enough to see whether or not that type of treatment was effective. It was. I had an almost complete response (meaning it pretty much killed all the cancer). I'm sure this also improves my odds. But with the remaining treatment, I have no idea if it even worked.
A friend of mine received all of her chemotherapy before surgery and her tumor didn't change at all; meaning the chemotherapy was not very effective.

Now to the Point of this Post: Tamoxifen

Tamoxifen is the hormone therapy drug. 80% of breast cancers are fed by estrogen. Tamoxifen blocks the estrogen. Some say this drug is more effective than any of the other treatments (other than surgery). It cuts the risk of recurrence in half. It is a very important part of treatment. The regimen is to take a tiny pill once a day for five years. Recent studies are recommending doctors increase it to ten years.

So we have to ask: if this drug is so effective, then why do half of the women who can benefit from this drug stop taking it long before the five years are up? Are they crazy? They endured chemo, radiation, surgery, hair loss, and all the other horrible side-effects that accompany their treatment and now they wuss out on a little hormone-blocking pill? These are women who have stared death in the face, who are remarkably brave and strong, who have overcome great obstacles. Why do they quit now?

I'll tell you why: difficult side-effects and a lack of social support.

Women don't expect this drug to be unbearable. Their friends and family don't expect it to be unbearable. When breast cancer survivors start taking Tamoxifen, they think cancer is behind them. They think that it is time to move on. They expect life to return to normal. And everyone around them expects them to move on.

The prayers stop. The visits stop. The meals stop. The constant words of encouragement stop.

Everyone happily rejoices that the battle is over.

It's a huge shock when survivors find out it isn't; when their quality of life becomes so poor that they start wondering: "What was the point in surviving at all?"

We are not complainers! We are not cowards! We are not victims!
We are survivors!
But for many, Tamoxifen is a very, very difficult drug.

Getting Personal

When I first started taking Tamoxifen, it seemed easy. I didn't have many of the terrible side-effects I read about. I rejoiced! I assumed the fatigue and the memory loss were residual chemo and radiation. It takes time for your body to heal.

After trying just about everything to increase my energy levels, I finally acknowledged it was the tamoxifen. I didn't want to admit it. I wanted to believe I could fix it and that how I felt was within my control. I couldn't accept that I have five years of this.

Over the last six months, it has gotten worse. The fatigue. The memory problems. The body aches. The insomnia. The added menopause-type symptoms of unstoppable weight gain, hair-thinning, depression, mood swings and many other unmentionable side-effects. In my experience, to an outsider, these symptoms don't seem that bad. People don't understand the severity. They don't understand how it effects the common things of everyday life and how many sacrifices have to be made.

I'm frustrated. Damie is frustrated. I feel like I can't take another day of this. The battle is long and we are weary.

I ran across a website recently where women were discussing their difficulties with the drug. I just sat there and cried, realizing I'm not alone. I'm not a wimp. There are people who understand. I felt so validated!

So now we start contemplating statistics. If after all that treatment, I have a 3% chance of recurrence (it is extremely unlikely that it's that low), then it isn't worth five years of misery to improve my chance of survival by 1%. If I have a 30% chance of recurrence and the Tamoxifen could cut that in half, then it would be unwise for me to stop treatment. But then, how can I even know if the Tamoxifen is working? This could all be for nothing!

Thus, the dilemma. Quality of life versus quantity? Can I work up the courage to call my doctor and ask about my chances? I've made it clear all along that I don't want to know. I don't want that number hanging around in my mind as if it has any say in whether I live or die.

It is our nature to avoid suffering. But I've lived enough years now to realize that suffering is good. Suffering grows us in a way that a life of ease doesn't. It teaches us, disciplines us, and changes us. Often times when you are in the middle of it, it seems unbearable. But later, once you are through it, only then can you see the beauty; the remarkable beauty that couldn't have developed any other way. I'm thankful for the suffering I've endured. I'm willing to embrace more suffering, as the Lord wills.

Please join me in praying for direction and peace. And healing in His perfect timing.

Sunday, May 19, 2013

Motherhood

For Mother's Day, I was invited to be a guest blogger on Walking with Him. When Missie asked me to write about motherhood, I told her I couldn't think of a topic I was less qualified to write about. But I decided to give it a try.

I discovered that although cancer seems to amplify all of my fears and insecurities regarding parenting, the feelings are common to most moms. It encouraged me to know that so many of my friends who are wonderful moms struggle with many of the same feelings I do. We all have our trials and we all need God's grace.

You can read the post here:

http://walkingwithhimblog.blogspot.com/2013/05/dying-to-become-perfect-mom.html


Tuesday, April 16, 2013

My Marathon

Mettle (mtl) n. - Courage and fortitude; spirit

I've mentioned before that when I was first diagnosed with cancer, I told my running BFF that if I survived, I would run a marathon. It's been almost three years since I told her that and I am lucky if I can make it around the block. I LOVE running and I miss it so much that if I think about it at all, tears flow.

People see me when I have energy. They see me when I'm at my best. They don't see the agonizing moments at home when I don't have enough energy to make it through the day. They don't see the constant disappointment that we feel when I can't go on bike rides or hang out on family night and play games. Sometimes I'm too tired to even sit and have dinner with my family. It is beyond frustrating. Exercise takes a back seat.

I have another running BFF. Yes, I know it is illogical to have more than one BFF, but when you run with people...you become BFFs. It's unavoidable. Danielle's husband is in the Air Force and they moved to Korea two years ago. Since then, she ran NINE marathons in NINE different countries! She is amazing and I love living her adventures vicariously.

She was here this past weekend for a quick visit. Before we parted she showed me one of her medals. It was the medal she earned running a marathon in Laos. She told me about the things she had to overcome to earn that medal.

Then she presented it to me.

I can't run a marathon (yet!), but I ran a race of my own and she wanted to honor my race.

I know how much work and sacrifice goes into training for a marathon. I can only imagine both the agony and the sense of pride in finishing one. And I know how much those medals mean.

I also know how much work and sacrifice it takes to battle cancer. It is difficult and often times feels like a never-ending marathon. It takes endurance...an endurance I never knew I had. To get a medal for that - a marathon medal earned by one of my friends - means more to me than words could ever express. It's overwhelming.


"Medals4Mettle (M4M) is a non-profit organization that facilitates the gifting of marathon, half marathon, and triathlon finishers’ medals. Runners from around the world give their hard earned medals to Medals4Mettle. Our worldwide network of physicians and volunteers then awards these medals attached to a Medals4Mettle ribbon to children and adults fighting debilitating illnesses who might not be able to run a race, but are in a race of their own just to continue to live their life. It is in honor of this mettle and courage in bravely facing these challenges that they are awarded a medal."


Wednesday, February 13, 2013

In Sickness and In Health

This past year, I have had many friends get married, which also means that I have attended a number of weddings. I love watching these couples, so madly in love and idealistically dreaming of marriage. I remember when I was first married. I remember what I expected marriage to look like. And now I know what it really looks like. It is so strange to compare the two. In some ways marriage is so much harder than I expected. And in other ways it is so much more wonderful and meaningful than I could have ever imagined.

There is one part of the wedding ceremony that overwhelms me every time. It has an entirely different meaning to me than it did when I said it fifteen years ago.

"in sickness and in health"

When I hear these words my throat constricts. Tears fill my eyes. I can barely breathe.
Do they know what this means?
Do they really know what they are saying?
Do they know the cost of laying your life down for someone else?
Do they know what it is to be completely dependent?
Are they ready for the trials ahead, where their true love and their true character will be revealed?

Probably not. They are envisioning the fairy tale.
But they will learn as they face the trials of life.
And if God is at the center, they can't fail.
But it's not easy.

Tomorrow is my fifteenth wedding anniversary. Last week my husband sent me this note:

In less than one week we will have been married for 15 years! Can you believe it? I can’t.
I know there have been some bad times and some hardships. I know there has been some sickness and pain, but my answer would and does remain the same…I Damie, take you Stephanie, to be my wife, to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, until death do us part.
I love you and hope to spend at least another 15 years with you.
Yours forever,
Damie

These vows, written in a simple email, mean so much more to me than the ones we said in a small church fifteen years ago. Over the years we have hurt each other. We have said and done stupid, foolish things. We both often think..."if we could just turn back the clock and do that differently."
But we've grown together. We've endured together. Our marriage has been tried by the fire of affliction and we are still standing, by the grace of God, strengthened and proven.

I am married to an amazing man, who has been faithful to our vows at great personal cost. He could never have known when he said them what would be required of him. He is faithful. He is strong. He still unselfishly lays his life down for me every day. And the most amazing thing is that he would choose to do it all over again.

Happy Anniversary Damie! I love you so much!!!

I Stephanie, take you Damie, to be my husband, to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, until death do us part.