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!”
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.
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.
“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.
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.
I 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.
Sometimes 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.
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 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.
I have received what I jokingly refer to as my “Mutation Certification Letter.” Part joke, part reality. It is a letter from my genetic counselor explaining the PTEN mutation, along with the diagnostic criteria and symptoms of Cowden Syndrome. Additionally, the letter includes a list of the scans that should be performed in the future to screen for any problems that might arise.
As you can imagine, it is quite a lengthy letter. Part of the reason for the delay in receiving it appears to be that the letter was returned by the post office for insufficient postage. Yes, it’s huge.
Toward the beginning, the counselor describes Cowden Syndrome as a “cancer susceptibility syndrome.” Seriously. My radiation oncologist asked me if I felt like a “tumor factory,” and I had to nod in agreement.
Cowden Syndrome puts me at risk for a variety of cancers as well as having a second cancer, both of which have proven true in my case. My doctor said that the chance of my having Invasive Ductal Carcinoma (Triple Negative) and Inflammatory Breast Cancer were astronomical, however, even with the mutation.
Regarding the “second cancer,” I was a bit confused after reading the letter and the literature online. Does it mean a second breast cancer? Or another cancer elsewhere?
So I asked my oncologist if I had now fulfilled my “quota” for the second cancer. We both laughed a little at my wording of the question, and then she began to explain the studies. Most of the second cancers found have been in older patients; living longer, they are more likely to have another cancer, with or without a genetic mutation. Still the research does point to one thing: I’ll probably have yet more cancers in the future due to the PTEN mutation.
Attempting to lighten the mood a bit, my oncologist went on to say that I have a mutation, but I’m not a “mutant.” I responded that she was giving me radiation treatment and so I could become one soon, à la the Incredible Hulk. She seemed a bit surprised at my response, probably along with being a tad weary of radiation jokes.
What else can you do, though, but laugh about the craziness of it all? As Julie Manning says in her newly released book, My Heart: Every Beat Surrendered to Our Unchanging God,
“This life is truly just a breath.”
Frankenstein or not, I’m still here, and maybe something good can come out of all of this.
This treatment is so rad!
I can’t help but think of that silly pun whenever I go in for my radiation treatments. Honestly, though, it is true in both the sense of “awesome” as well as “extensive.” Medical advances in the treatment of inflammatory breast cancer have benefited many of us, giving us more hope of a life.
My current regimen will take place over 5 weeks, with treatments 5 days a week. As this is technically a re-treatment to the same area of my chest, the dosage each time will be lower, adding on an extra 3 days at the end. This will make a total of 28 treatments.
Each of the daily treatments are short, generally only 15 minutes or so. I lie on the table as the machine rotates around me, pausing at set intervals to provide a dose of radiation to a certain area of my body. I hear the machine make a noise, and then it moves on to the next spot.
Certainly less time consuming than chemotherapy, which is wonderful. And while the effects of radiation treatment are cumulative–as with some chemotherapy drugs–the side effects of the radiation treatment are generally less.
Scary? In so many ways, with the potential long-term effects on my body. It is sort of the next-to-last ditch effort to kill this cancer, though, with hysterectomy and anti-estrogen therapy being the final stages of treatment. Cancer often forces us to make difficult choices in the short term, all with the desire to live just a bit longer.
Feeling ok about the treatments and trying to maintain hope that this will be a cure for me and get rid of this current cancer for good.
Still, having been a long-time science fiction fan, my mind often wanders to the many terrifying medical scenes in so many TV shows, movies, and books. Perhaps my favorite is the “New You” scene in Logan’s Run. I imagine the radiation machine going “rogue,” turning madly like a demented carnival ride and releasing deadly amounts of radiation.
Maybe that’s just me, though. Possibly one of the down sides of being a science fiction fan who must be treated with high tech medical know-how. Or simply someone with an overactive imagination.
As Julie Manning describes her own medical journey in her upcoming book, My Heart: Every Beat Surrendered to Our Unchanging God,
“Some would say this journey was courageous; however, I did not feel the least bit brave.”
Do I feel courageous? No, I sure don’t. Often I just feel tired.
Some days are better than others. I hurt every day now, and sometimes it’s just difficult to take this journey even one day at a time. But I know I am in good hands, and there is still hope for a positive outcome of all of this mess.