Letrozole and Life

Letrozole

I admit that it has been difficult to be thankful for Letrozole lately, even if it is keeping me free of cancer at the moment.

It seems like it places me between the proverbial rock and a hard place. Do I take the medication and live longer but with extreme pain? Or do I quit the medicine and feel better in the short term but have at least a 50% chance of recurrence?

At the age of 44, I am too young to become housebound. Even during chemotherapy, I was able to exercise at least one hour per day during my weeks off from treatment. Now I struggle some days to just make it to the bathroom or simply get off the couch.

Also, my thinking became somewhat suicidal last week. I thought everyone would be better off without me. Whether it was the stress of the divorce or the medication, I don’t know. I took a couple of days off from the medicine and feel better. I have resumed taking the Letrozole, so I suppose I’ll wait and see if the thoughts return.

At this point, I’m not sure what I will choose in the long run. I’m going to stay on the medication for now and hope that things improve.

Things have to get better, right? I’m praying that they do.

One Little Pill

One Little Pill

I suspected.

Some would say this might be a self-fulfilling prophecy, but I know more than one woman who would agree with me. Letrozole has had the biggest impact on my life in the short term, and not in a good way. The pain on Letrozole vs. Anastrozole is so much worse than before.

And I have not been on the drug for very long.

Indeed, only two weeks. According to my friend who tried this medicine first, the pain did not really hit her until about now. She was taken off of the drug after her thumbs became frozen.

Doing any sort of work has been nearly impossible for me as it causes extreme pain, so much so that I can’t sleep. The house and yard are going to pot, but I’m still alive, for which I’m grateful.

Some times in your life, you realize just how fragile your body can be. I miss the strong, healthy body that I used to enjoy. One that didn’t cause me pain each and every day.

Still, I’m alive. And that’s a blessing.

Choices in Treatment

Choices in Treatment

Some may believe that making a choice as far as cancer treatment is easy. Suffer for a little bit and live, right?

The difficult part is walking down the path that you have chosen and accepting the consequences, whether good or bad. No matter the decision–strictly allopathic medicine, natural remedies, or something in between–the results may be positive or negative, and often not even the most experienced doctor can predict survival.

And when it comes to long term treatment like anti-estrogen therapy, the choice may be a bit more complicated. For a friend, ten years of medication only added 3% to her survival rate, which was more than enough for her to begin the medicine. On the other hand, considering I had inflammatory breast cancer, a cancer that is much more aggressive and difficult to treat, anti-estrogen therapy added 30% to my survival rate.

So if I follow all of the advice from my doctors–all based on world-wide research–my possibility of living a full life is currently at 80%.

What is often not discussed is the pain associated with these medications. I have been on Anastrozole for a few months now, and the body-wide bone pain has begun to increase dramatically. This may be possibly due to the current stress in my life, or simply just the medication itself building up in my body. Needless to say,  the pain some days can be unbearable.

So in the latest visit with my oncologist, he encouraged me to try Letrozole. This might be a better medication for me in the long run, but it will put me back to square one as far as pain. My body will have to become used to the new medicine, which means more pain in the short term. And this could all turn out to be a fool’s errand, becoming an even worse experience and leading me back to Anastrozole.

Honestly, it would be easier to quit the medication totally.

Reading The Last Arrow by Erwin McManus, I found a passage that made me reconsider that possibility:

“Sometimes the only way to set people free from the past is to create a different future that gives those all around you the inspiration and hope to set their own past on fire.”

Or as a friend told me after my most recent diagnosis, “Perhaps you were not meant to learn something from your suffering. Maybe you were meant to teach others how to live through it.”

So pain will be my companion for awhile. Some days I will break from the exhaustion, but I will not quit. And perhaps my continually rising up after defeat, even in the midst of pain, will give others hope.

 

Adventures of the Flat and Infertile

adventures of the flat

My next step in treatment is about to commence. Yes, the dreaded hysterectomy has been scheduled for next week.

Nothing like sitting in the waiting room of a gynecologist’s office to make you feel a bit conspicuous. Childless, flat, and there to schedule a hysterectomy.

When I met with the doctor and had my initial exam, I was somewhat surprised to find out that I wouldn’t be able to have a¬†laparoscopic hysterectomy due to my size, fair skin, and lack of childbearing.

Who knew that being a petite, redheaded woman with breast cancer and no history of childbirth would be a drawback when it came to this surgery?

I will be undergoing a full abdominal hysterectomy, with the one large incision on my abdomen. The average hospital stay is about two days, with recovery about six weeks.

Honestly, I’m dreading this surgery, but I’m ready to have it done. At least this will eliminate the Zoladex from my current medication regimen. Although it doesn’t cause me any side effects, I will no longer have to go in for the monthly injection of the implant.

Too, as a patient with Cowden Syndrome, I’ll be eliminating one more possible risk in having this surgery done on a prophylactic basis, way ahead of any cancer developing. As I’ve already had my thyroid and breasts removed, I suppose I’ll doing pretty well as far as future risks are concerned.

And frankly, I’m pretty sick of cancer at this point. I’ll do what I can to avoid any further encounters with the beast.

I’ll be offline for a bit so that I can get things prepared in real life and psyche myself up for this next round in the surgical suite.

See you soon!

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.

 

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.

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.