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.

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.

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.

Radiation Treatment and Me

radiation-treatmentSo…radiation therapy.

There’s been a big question since the beginning of this latest cancer journey as to whether or not I could have radiation again. Also, there is the addition of the PTEN mutation to the whole equation, making things that much more complicated.

In 2004, I had radiation to my right breast after I had completed chemotherapy and a lumpectomy with sentinel node biopsy. As the biopsy of the lymph node was negative, the radiation only covered the breast and not the axillary lymph nodes in the armpit.

This current cancer is also on the right side. As it is inflammatory breast cancer, the standard radiation treatment would cover the entire right breast as well as the axillary lymph nodes and part of the neck. This treatment protocol would have been the case no matter the results of the lymph node biopsies during the bilateral mastectomy.

Having not had radiation to the armpit and neck areas in the past is a plus, but the problem will lie in radiating the right side of my chest again, especially as I no longer have breasts to “target” in the treatment. The main risks include rib fracture and tissue necrosis, as well as problems related to those organs that may receive radiation (lungs, liver, etc.).

And of course, “feel the burn” will be literal. Causing a reaction in the skin–i.e., burn–will be sought after. I have had plenty of sunburns in the past, but I think those may pale in comparison to what this upcoming radiation treatment will bring.

Scary so far?

The positive in my case is that there has been such a long time since my last radiation treatment. According to my radiation oncologist, there have been studies over the past ten years or so showing that the tissue can repair itself after radiation treatment, making a second treatment to the same area safer.

Regarding the PTEN mutation and radiation, there was apparently much discussion among the local radiation oncologists and my medical oncologist. Some patients with both the PTEN mutation and breast cancer are warned not to receive radiation treatment. As this mutation and its associated problems do not result in DNA breakage, my oncologists believe that radiation treatment will be fine in my case. They could not find any studies that led them to believe that Cowden Syndrome would be a contraindication when it comes to radiation treatment.

Basically, the consensus is that they can repair the damage caused by the treatment, but they cannot treat a recurrence. The risks associated with the cancer outweigh those of the treatment.

So radiation treatment will begin soon. I had my simulation appointment on Friday; this is where a CT scan is taken and marker tattoos–these are used to align the machine during treatment–are placed. (Yes, I now have one more tattoo to add to my collection of “dots,” making a total of three.) The oncologist will use the CT scans to begin formulating a treatment regimen.

As she went through the process, she decided that she would treat a much wider area of my chest than I expected. The treatment area will cover part of my left chest, my entire right side and part of my back, and part of my neck.

Scary now?

I will be having a pulmonary function test and bone density scan to provide a baseline before treatment begins. Also, due to the complexity of my case, the radiation oncologist may take a couple of weeks to research and further refine the treatment protocol.

Although I was able to slide through the surgery and treatment in 2004 with minimal long-term problems, this is obviously not the case with the current cancer. My body has already been changed permanently by the bilateral mastectomy, and now there will be lasting consequences from what lies ahead (radiation treatment, hysterectomy, and anti-estrogen therapy).

Scary therapy or deadly cancer?

I’m going with therapy and a hope for a cure.

 

 

 

 

High Anxiety

high-anxiety

I must admit that I have never watched High Anxiety although I have attempted to do so in the past. The humor and movie references were way, way above me at that point in my development.

Still, the title is very appropriate for me these days.

While in the surgical waiting room before my bilateral mastectomy in December, I was anxious about the procedure. I did not want to have the surgery and was uncertain about my life afterwards. As a result, I found myself sobbing and bent over the trash can in the waiting room while the older men and women who sat in chairs around me just stared at this hopeless wreck of a woman.

I have never been like this.

And today, I had a similar experience before my two appointments with my medical and radiation oncologists. Weak and ill, I yet again became sick before we even drove to the hospital.

I managed to make it through my appointments, though. I found out more about the staging and biopsy results today. The cancer is officially Stage 3B, with a small margin of cancer remaining in the muscle and two positive nodes. Both doctors reiterated the high possibility of a recurrence or future metastasis of this cancer.

Before the radiation oncologist treats me, she will be researching PTEN and any related risks involving this. There are additional problems in that she will be treating the same area that previously received radiation treatment in 2004. Right now, though, she believes that the risks of the cancer outweigh any risks of the treatment itself.

Honestly, I’m tired and frustrated at this point. Anxious too and feeling alone in all of this long, drawn-out process.

Being a “brave” cancer patient can be exhausting, to be honest. That’s the real truth of it all. I admit I don’t like the current plot of my life, but I’m hanging on to the hope that is stated by Craig Groeschel in his upcoming book, Divine Direction: 7 Decisions That Will Change Your Life:

“I am not a quitter. With the help of my God, I am a finisher.”

May things be better tomorrow, with a new outlook and a fresh hope so that I can be a finisher too.

Regaining Strength

regaining-strength

Having been through all of this cancer stuff twelve years ago, I honestly expected this time to be pretty much the same. Naive, I realize now.

In 2004, I was 31 years old when I found out that I had cancer. Still fairly young–I’ve known breast cancer survivors who have been diagnosed at a much younger age–I was able to bear the effects of the treatment and surgeries, still maintaining a somewhat normal life. Indeed, I took advantage of the amenities at our local YMCA and exercised regularly and even attended hour-long classes during my treatment.

Now? Things have changed. Dramatically.

The chemo drugs hit me a lot harder this time around. Some days my only cardio was simply hobbling to the bathroom with an unsteady hand braced against the wall as I slowly moved forward. During my off weeks, I gradually began stretching, cardio, and weight lifting. By the time I was ready for my next round of chemo, I was feeling pretty darned good. And then I would be back at square one once that chemotherapy began dripping into my veins.

After my bilateral mastectomy in December, I was not allowed to exercise or move my arms for at least the first couple of weeks. Once I did get the go-ahead from my surgeon, however, I was off and running, so to speak. She had given me a deadline of a month to get back full arm range of motion. If I was not able to make this happen by my next appointment, I would be forced into physical therapy.

By this time in my treatment, I was angry at my body for being so weak, and I was determined to rush the process of regaining strength and mobility. I returned to the videos that I had relied upon for my exercise routines before and during treatment. Grunting through the stretches and low impact cardio, I pushed through.

Bad, bad idea. My body rewarded me, but not in the way that I had hoped. I instead found myself wracked with pain and muscle spasms.

I had been focused on my hoped-for end point, full health and strength, along with a proclamation from the oncologists of NED (No Evidence of Disease). As Craig Groeschel says in his upcoming book, Divine Direction: 7 Decisions That Will Change Your Life,

“If you try to focus now on the last chapter of your story, you’ll likely find yourself too paralyzed to write the first page.”

Although I had a goal–regaining my strength and mobility within a month–along with a singular focus on the end of my treatment, I had effectively paralyzed myself into inaction by my refusal to accept this stage in my life fully. Despite a logical understanding that I do have cancer for a second time, I still don’t want to believe it at times. The hopeful end point of my treatment (NED) seems tenuous now, and I have often attempted to bulldoze my way to that unknown future in order to escape the current pain.

After a period of depression and a downright pity party following my initial attempts to exercise after my surgery, I’m trying to take things a bit slower now. I may not know if I will ever reach that final diagnosis of NED, but I can move forward a bit now, trusting my future to God. As Groeschel goes on to say,

“I like to say it this way: I will do today what I can do to enable me to do tomorrow what I can’t do today.”

Today I can try to raise my arms a bit more than the day before. I can do a bit of cleaning to increase the strength and range of motion in my upper body. And I can rest.

Time and patient effort right now are needed. As Ellie Arroway is told in the movie Contact, “Small moves, Ellie. Small moves.”