Mother’s Day and Breast Cancer

Mother's day cancer

My mother died in 1999 after a recurrence of breast cancer.

With little information at the time–no internet, only the beginnings of patient rights–we didn’t recognize the signs of a recurrence until it was too late. Her behavior began to change over time, showing signs of recklessness and forgetfulness. And then she suddenly had trouble walking, having collapsed at home.

Doctors in the ER informed my father that a scan revealed tumors along her spine. She was released home with pain medication, but little else to do as far as next steps. Her extreme reaction to chemotherapy in 1992 precluded any more chemo treatment for the recurrence, and so we were left with pain management and the awareness that her time with us would be limited.

After a call from my father, I drove home from college. She died the next morning on our couch.

Since then, I have regularly avoided going out on Mother’s Day, and that now includes social media as well. People say that the pain and loss of losing your mother–or any other family member, for that matter–lessens over time, but I believe it is more your learning to live with the loss.

And now this year, I have breast cancer yet again. The same cancer that killed my mother so long ago.

I am finding this day to be more difficult than I expected. My flat chest, many medications, and constant pain only serve to remind me of my mother in the most horrible way, that of a shared illness and possible death. And the celebrations that litter my Facebook stream only enhance that awareness.

My mother was loving but a rather complicated woman in that she had a misdiagnosed mental illness. If she had lived longer, she might have been able to receive the treatment that she needed. I know that she did the best she could considering her struggles, and I will honor her for that.

But I cannot join in on the celebration of this holiday, especially this year. I loved my mother despite everything, and the pain of her loss is still too great even after all these years.

If this is the first Mother’s Day that you face alone, please know that my heart and prayers are with you.

Things I Didn’t Know about Estrogen…

Things I didn't know about estrogen

Although fertility is an issue for so many women facing breast cancer, it has never really been a problem for myself or my husband. We decided a long time ago that we did not want to have children, and we’re still content with that decision.

Too, if a hysterectomy and anti-estrogen therapy just removed my ability to have periods, I’d be totally fine with that. My periods have always been horrid, and cancer treatment has brought me great relief in this part of my daily life.

But as I get deeper into my anti-estrogen treatment and think about scheduling my hysterectomy, I realize just how important estrogen is to our bodies.

Now, I realize that menopause is a natural occurrence in a woman’s life, but chemical menopause is something else entirely. There is no natural transition over a decade or so into a crone. Chemical/surgical menopause is instantaneous and harsh, affecting every part of a woman’s health and lifestyle.

And all too often, breast cancer patients who face this are much too young to even be in peri-menopause, much less the beginning stages of menopause itself.

And no, HRT is not an option. Some people that hear about my being treated with Anastrozole mistakenly believe that this drug is a form of HRT and thus “balances” my hormones to relieve the symptoms of menopause.

Actually, the opposite is the case. The drugs that I take further decrease any remaining estrogen in my system after a hysterectomy, or as in my current state, in conjunction with Zoladex, which shuts down my ovary function and allows me to take the Anastrozole.

So what have I discovered about estrogen now that it’s gone from my body?

(Or at least being chemically suppressed.)


It’s important for eyesight. Even with my fairly new prescription for bifocals, I am increasingly having difficulty reading, which is one of my favorite pastimes. Books almost have to be loaded on to an e-reader so that I can adjust the print size, and even a large print Bible is too much of a strain on my eyes at this point. This has been a surprising and really disheartening side effect of this treatment.


There are increased problems with insomnia. Stress is obviously part and parcel with cancer treatment, and this can most certainly contribute to an inability to sleep. But when hormones suddenly drop, as with the Zoladex–and eventually a hysterectomy–along with the Anastrozole, it becomes more and more difficult to sleep.


It’s important for memory. Although the linked article seems to have a mixed view on the topic, the significant part in the language seems to be that the combination of chemotherapy and anti-estrogen therapy produces a worse result cognitively. (At least that’s how I’m reading the medical jargon.) Too, I have to wonder how many of these women in the studies are truly post-menopausal or have had it induced so that they can take the anti-estrogen therapy.

I am hoping that more research delves into the experiences of younger women with chemically/surgically-induced menopause who are taking anti-estrogen therapy. You can find comments about Anastrozole and similar therapies from women on The Underbelly’s Facebook page.

I struggle now to complete even simple tasks, and my ability to think creatively and to write has been significantly impaired. Recalling even simple words or memories can be extremely difficult for me now. That “it’s on the tip of my tongue” sort of feeling is a constant, everyday thing. I seriously wonder if I will ever be able to function normally in a workplace setting while taking these drugs.


It’s important for bones. Honestly, I already knew this, but I suppose I wasn’t aware how significant a part anti-estrogen therapy can be in the weakening of bones, thus putting even young women at a high risk for osteoporosis and broken bones. As a part of this, of course, another side effect of Anastrozole is bone pain.


It’s important for your heart. And unlike the information in the linked article, HRT is not an option to deal with this particular side effect.


It’s important for weight control. There is also the additional problem that anti-estrogen therapies often cause weight gain, whether through the effects of the drug itself or the lack of desire to exercise due to the constant muscle and joint pain.


I’m sure I’m missing more of estrogen’s effects throughout our bodies, but you get the idea.

(Just wandering through my virtual home at the moment, scratching my head and wondering why I came into the kitchen. And when someone says something to me, I say, “Eh? What’s that sonny?”)

Although menopause in your 50’s and 60’s may be natural, that experienced by younger breast cancer patients is not. The side effects of the surgery and treatments are severe and long lasting. And pervasive.

I suppose if you are still healthy and enjoy the effects of estrogen in your body, my advice would be something akin to that of Robert Herrick, in his poem, “To the Virgins, to Make Much of Time”:

Gather ye rosebuds while ye may,
Old Time is still a-flying;
And this same flower that smiles today
Tomorrow will be dying.

 

When Life Stops

When Life Stops

It will soon be almost a year since I was diagnosed with breast cancer for the second time.

It seems like life has effectively stopped for me, leaving me untethered from all that provided me with the structure of daily life. While my work once created the boundaries of my days, now the treatments have taken over that role, resulting in new, smaller borders and limited capabilities.

Depression has set in big time.

Although I have struggled with this much of my life, the onset of this most recent episode started not long after I began taking Anastrozole, which can cause depression and insomnia, among other things. The depression with Anastrozole is different than any previous darkness. It is much deeper and foggier, with fatigue as an added weight.

I’m gradually moving out of this depression, but it is taking time. Still, there is some progress.

I was blessed to be prayed over twice this week, and I feel a lightening in my spirit even though my circumstances are still the same.

Things are changing, and I believe that this spring will bring new opportunities.

Right now I feel the need to focus on recovering spiritually and emotionally after all that has happened this past year. That means more private time, more scripture, more prayer. Clawing my way up out of the darkness bit by bit.

Until my writing juices are up and running again, take a moment to read this article that I wrote for Compassion That Compels, a great organization. If you have a bit of extra money this month, please consider making a donation.

And if you need prayer, please comment on this post with your prayer requests. Even if I can’t hug you or offer you a cup of coffee, I can be there with you virtually, praying and believing.

Venturing Out

Venturing Out

I went to church on Sunday. This was my first real outing since my surgery and of course, radiation.

Everything was wonderful except for the pain.

Now that I have technically finished active treatment, people look at me and seem to see just a normal, healthy person. So many memes now mention “hidden” illness and pain, and I suppose I have an intimate understanding of this after beginning Anastrozole. Others don’t get why I continue to experience pain and fatigue, both of which urge me to stay at home.

As one person said when I mentioned that the drug causes pain, “But medicine is supposed to make you feel better!”

Precisely.

Going out and about can be a cause of anxiety for cancer patients. Our bodies no longer look or act like they used to, and facing healthy folks’ reactions can be a bit of a scare. Add pain to the mix, and it’s all too easy to stay at home.

Cancer treatment can often mean accepting the Devil’s own bargain. The various treatments offer the possibility of a cancer-free life, but that life may be one of pain and illness. We accept that awful bargain, though, because we love our families and want to stick around for a while.

Puttering around the house and allowing myself to rest when needed sound much more pleasant nowadays than social interactions. Cancer changes you, and it ages you.

The pain should subside after a few months on the medication, but until then I may have to learn to just say “No” when it comes to going out with others. Hopefully folks understand.

 

 

 

 

 

The Best Laid Plans

Best Laid Plans

Releasing my own expectations and plans has been a difficult part of my own cancer journey. I had worked hard to build up my reputation with my employer, and I was proud of my accomplishments. I had my own expectations for my life and what would happen in the future. After my cancer diagnosis last year, my life began changing rapidly.

My body and my plans went awry, so to speak.

During cancer treatment, you learn pretty quickly to roll with the punches. Depending on the results of scans or reactions to medications, the direction of treatment can veer around the corner into a new neighborhood, leaving you wondering at the scenery.

My latest tour through the unknown was my reaction to Tamoxifen. After a little over a week on the drug, I found myself calling my oncologist and asking for help with the side effects, all of which could be found in the “Incidence Not Known” listing. I was taken off the drug immediately.

The new plan is Zoladex + Anastrozole until I am able to have a hysterectomy. When I meet with my oncologist next month, I’ll most likely get a referral so that the plans for my next surgery can begin taking form.

Can I admit something right now? I generally don’t like change.

Although I try to cope with things in a healthy manner, I’ve sometimes resorted to not-so-healthy ways, such as eating frozen cookie dough. Yes, you heard that correctly. Each night, when everything was quiet and I had plenty of time to think, I suddenly had the overwhelming need for the cold sweet stuff.

I’d feel ashamed, but then I’d do it again the next night. Finally I put a stop to it by putting the bag of sinful goodness in front of my husband. It was gone that night.

I know that many cancer patients like myself have struggled with their own unhealthy coping mechanisms. Too, we feel even more ashamed when we fall down because of the incredible pressure to be a positive, healthy-eating, exercising, full-of-gratitude, and all-around perfect cancer patient. If we don’t live up to that ideal, then we feel even more awful.

The truth is, we’re only human. And that sometimes means eating cookie dough at night in order to cope with often overwhelming circumstances.

As Mike Foster says in Rescue Academy,

“It’s human to run from our hardship and our feelings. It takes recognizing God’s grace to stop running and turn around to face the lion that is chasing us.”

So, at least from my perspective, I say give yourself a break. Cancer treatment is long and tiring and downright awful. You’re doing the best you can. And if you fall down, pick yourself up and try again.

At this point in my treatment, I’m beginning to think about my future again. My original plans and my body have already gone awry, and so I must gather up what remains to re-shape and re-form my life once everything finally settles down.

The thing is, this is me now. Cancer changes things, and it changes you.

The fun of Anastrozole will be with me for a long time, and the risk of a cancer recurrence is high. Any plans I make will have to incorporate all of this, allowing me to jump on the airplane of change at a moment’s notice. What will that mean for my future? I honestly have no idea at this point.

Mike Foster goes on to say,

“…God provides us with permission to embrace it all. And we mean all of it! We start to see our hurts and hang-ups on par with the bright and beautiful, not as ‘better or worse.'”

Like it or not, cancer is part of my life and will most certainly be so for the rest of my life. But life goes on.

And if I occasionally eat some frozen cookie dough, that’s ok.

Now What?

Now What

With cancer treatment, you seem to be maneuvering through an obstacle course in the fog. Just when you scale one wall and begin to run again, you encounter a bunch of rocks that make you slow to a crawl. It’s sort of an endless cycle of doctors and medications and scans and side effects.

You’re often left wondering, “Now what?”

Having finished radiation, I began to recover strength, both of body and mind. After a bit of a break, I started the Tamoxifen. For a while, I experienced no side effects. I was sure I was going to get off scot-free. I congratulated myself on being one of the lucky ones.

“Not so fast,” life said.

The pain and fogginess began gradually. I thought at first that it was simply my body recovering from the radiation, or perhaps just a bit too much exercise. But the side effects only grew stronger each day, and I knew it was the anti-estrogen pill.

I’ve struggled to recall names and facts, or sometimes even form a coherent thought. And the pain is similar to when I was receiving the Neulasta shots. Pain that is constant and limiting, very similar to some of my worst days during chemotherapy.

I’ve found myself thinking, “What fresh hell is this?”

I now understand why women often say that anti-estrogen therapy changed their lives more than chemotherapy or even surgery. And I also know the desire to quit taking those darn pills.

I will be on Tamoxifen for three months, after which I will again meet with my oncologist and schedule a hysterectomy. After that surgery, however, I will begin taking another anti-estrogen medication, a medication regimen that will last for ten years.

It’s possible that the side effects may lessen as my body becomes used to the medication. However, I think it’s pretty certain that my body and my life will never be what it once was. Learning how to live with these changes is now my current challenge.

As Mike Foster says in Rescue Academy, we often let our pain define God. When your life becomes centered around medications and pain and doctor visits and scans and whatnot, it can seem like that’s all that’s left, a shell of a life that once was. But maybe we can turn it around, let God define the pain.

That’s what I’m trying to do at this point. Turn my view around and live.

Just a Totally Honest Post…

Totally Honest PostI have finished radiation treatment and have begun Tamoxifen, with a hysterectomy to follow in a few months.

Since beginning this drug, I just feel empty, discouraged, and have had trouble concentrating, among other things. And writing? That’s flown out the window and is now in the ether.

Luckily, I wrote an article for The Underbelly before all of this nonsense.

Please bear with me while I attempt to reassemble myself while on Tamoxifen. I feel like a bucket full of lego bricks that has been shaken violently.

The First Rule of Cancer Club

first-rule-of-cancer-clubSometimes it’s best to just keep things within “Cancer Club,” those of us who have been there and understand the ups and downs of the illness. Cancer pushes the absurdity of living to the extreme, whether in the physical or social or emotional realm. And often even the most loving friends and family members will not get it.

I suppose it would be similar to the first rule of Fight Club: There’s no use talking about certain issues related to cancer with those who have never fought it.

Recently I was told by a dear friend that I should not worry about clothes and such, that those things are simply vanity. Honestly, I understand the perspective that regaining health should be more important than appearance. I get it. However, “living flat” in a society focused on buxom women is difficult.

When I had my bilateral mastectomy–surgery without reconstruction–I realized that breasts were everywhere. They are part of our society’s views on sexuality, womanhood, and self image. Women’s clothes and lingerie and fashion are built around them.

Basically, if you’re a woman, then you have breasts, and you learned early on in life that they are important.

And once they’re gone?

Breast cancer has forced me to come to terms with what makes me a woman. Also, on the more practical side, the surgery has compelled me to look at my clothing differently as I could no longer wear much of what was hanging in my closet. Suddenly being feminine had become a huge and seemingly impossible thing in my life.

And going out of the house among regular people who aren’t part of Cancer Club–people who only see the woman with the hair that’s just growing back after chemo and the flat chest–can be anxiety producing for me. Really, it can be hard to even imagine that I will ever feel comfortable–much less womanly–again. Because the only people who truly understand the issues of womanhood and breast cancer are either part of Cancer Club or work at your local Cancer Center.

So being called vain just because I worry about finding clothes that fit me now that I am flat? I wanted to scream. (I seem to find myself wanting to do that a lot lately, actually.)

Normal, healthy women, no matter their cup size, will most likely never be able to get it. And honestly, I pray that they will never have to hear the words, “You have cancer,” and then face an enormous surgery like a bilateral mastectomy.

Yes, regaining health and surviving cancer should be our focus. But for a woman with breast cancer, feeling feminine is also important. And regaining that feeling after breast cancer surgery and treatment is a big, big thing.


Cancer survivors want to feel beautiful and sexy. Check out the video of AnaOno’s fashion show in New York, which featured lingerie made for women living with breast cancer. Lovely and strong women–seven of whom are living with metastatic breast cancer–finally got their chance on the catwalk. Thank you, AnaOno, for creating lingerie just for us.

Nonprofit Spotlight: Compassion That Compels

compassion-that-compels

A few months ago, I was scrolling through my seemingly endless Facebook feed when I happened upon a post about the nonprofit, Compassion That Compels.

Already in the thick of my chemotherapy treatments and struggling with the side effects, I was sick and tired of it all. All of the pain and loss and illness and everything. I had become disheartened by the severity of the cancer as well as the loss of so much, even by that point in the treatment process.

So when I saw the post about this charity that wants to bring hope to women struggling with cancer, I had to click to find out more. After reading the simple and yet powerful mission of the ministry–“to reach every woman battling cancer with a Compassion Bag, reminding them they are never alone”–I decided to request a bag.

These bags are beautiful totes, packed full of inspirational goodies for cancer patients. From the Jesus Calling devotional to the lovely plush blanket, each item is a wonderful reminder that there are people who care, no matter how dark the fight against cancer might get. And that we are beautiful to God, despite what may be currently happening to our bodies.

I was fortunate that someone sponsored my bag, but there are many other women who are still waiting for a Compassion Bag of their own. If you can spare any amount, please consider making a donation to Compassion That Compels.

They are truly bringing hope and love to cancer patients through their caring ministry. Please help them reach others like me and spread hope throughout the cancer community.

Accepting the New Normal

accepting-the-new-normalAccepting the fact that your life will never be what it once was after a major illness can often be the hardest thing to overcome. It has been for me.

When my current cancer journey began in July of last year, I easily fooled myself into thinking that this would be similar to my first diagnosis in 2004. I thought I would go through surgery and treatment, easily sliding back into my old schedule and employment.

Hoping to return to work soon has often been my lifeline over the past several months. I happily remembered having gainful employment and feeling that wonderful sense of accomplishment when a particular task was completed. Despite the often stressful nature of my job, I loved the work. And I miss it even now.

But the progression of this particular cancer journey has been much different. The cancer is much more serious, and the treatments have been life changing. This is Inflammatory Breast Cancer, Stage IIIB, and I am now much older than when I was first diagnosed back in 2004.

My body and my life are now totally different than they once were.

I have had a bilateral mastectomy with no reconstruction due to various reasons…

I have been diagnosed with a rare genetic mutation that puts me at greater risk for multiple cancers…

According to the doctors, it is almost certain that I will face even more cancers in the future due to my diagnosis of Cowden Syndrome…

I have undergone another course of chemotherapy, which has caused pain and illness…

I am now undergoing radiation treatment to the same area that was treated in 2004. I am already burned and am in constant pain now…

Breathing has become difficult since the radiation started, which sometimes limits my daily activities…

The fatigue from the treatments just doesn’t seem to end…

I am now in chemically induced menopause, which along with the mastectomy, have basically destroyed my sexuality as well as caused long-lasting effects throughout my body…

After radiation, I face a hysterectomy and most likely 10 years of anti-estrogen therapy, which are known to cause extreme pain and weight gain, among other things…

I have lost at least 10 pounds and have been physically weakened by the surgery and treatments…

I may already have osteoporosis due to the treatments, and so may have to begin treatment for that condition…

And that’s just a short list of all the changes to my life that have happened so far, the beginning of my “new normal.”

And now I have found out the truth about the doctors’ current success with treating inflammatory breast cancer. While it has improved over the past 10 years, their success rate is now 50%. I have a 50% chance of being cured with all of the treatments that are currently available. If I happen to fall into the other 50%, then I have been told their ability to treat a recurrence would be quite low.

I have given up hope of returning to work any time soon. I have filed for disability, which has been something I have dreaded doing.

I do not want to be sick. I want to work and feel good about accomplishing things. I want to feel like my old self before all of this started.

Perhaps acceptance of things is good. Or maybe it’s giving up. I’m not really sure at this point.

But I tire of people dismissing the true effects of cancer. I have been told that surely I now see the “light at the end of the tunnel,” and everything can go back to normal. I wanted to scream when I heard this but stayed silent.

There will not be any going back to my former life. My body is changed permanently, and I may have effects of the treatment for at least a decade, probably longer. And I may never return to work. And to be perfectly honest, this cancer may kill me.

I just don’t know any more.

I guess I have come to that point where acceptance of this “new normal” is my only choice. What happens after this, I have no idea.


If you’re the praying sort, please pray for me. I have been struggling mentally and spiritually–and well, physically–lately. I could use the strength and prayers. And possibly a bit of fun if you can share a bit.