Counting My Blessings: My Breast Cancer Story
Some of you may know me as the author of Counting My Chickens, a home and garden website and blog. But I’m not counting chickens today. Instead, I’m counting my blessings.
On September 13, 2016, I received the news that no woman wants to hear. I was diagnosed with Stage II breast cancer. I haven’t yet talked about my diagnosis on my blog or on social media. In fact, this recounting may be the first that some of my friends and extended family are hearing about it. But today, as we reach the end of Breast Cancer Awareness Month, I decided it was time to tell my story. Let’s just call it my big F* You to cancer.
My Breast Cancer Story
My story starts out innocently enough. On September 1, the Thursday before Labor Day, I went for my annual mammogram, as I have done every year since turning 40. This year was different, though. I had lost my mom to breast cancer the day after Christmas and, eight months later, my grief still overwhelmed me at times. I checked a box on the intake form agreeing to undergo a more expensive 3D mammogram and to pay the additional costs not covered by insurance. That simple scratch of the pen may have saved my life.
After a few minutes, the mammogram technician came out into the waiting room to take me back for the procedure. Predictably, I started to cry when she asked if I had a family history of breast cancer. But the mammogram itself was uneventful. I couldn’t tell any difference between the 3D mammogram and the regular kind. I couldn’t remember whether I had checked the box last year, too. I hoped I did.
To my relief, I didn’t receive “the call” by the end of the next day. You may know what I mean by “the call” – when the doctor’s office calls to say you had abnormal results on a mammogram and need further testing. I had received two of those calls before; on both occasions, the additional diagnostic tests came back negative. I figured I dodged a bullet for another year and headed out to enjoy the long holiday weekend.
The call came on Tuesday morning. At that point, I had forgotten all about the mammogram after a fun Labor Day weekend. I was busy preparing my lesson plan for the college class I teach and almost didn’t answer the phone. The number I didn’t recognize turned out to be a nurse from my doctor’s office. She told me there was something on the mammogram that wasn’t there last year. I would need to go for a breast ultrasound. She scheduled the test for Friday.
I tried not to worry too much. After all, I had two prior bad mammograms that turned out to be nothing. I told myself that at least I could be confident that someone was looking closely at the images. Sure, a false positive was stressful, but it was better than missing something, right?
My prior bad mammograms involved the right breast. This new suspicious area was in the left. I felt my left breast for lumps. I hadn’t been diligent about doing my monthly self breast exams … okay, I hadn’t done them in years. I have dense, fibrous breasts – one radiologist referred to them as “busy breasts” – and all the perfectly normal lumps and bumps freaked me out. And I never missed an annual mammogram. I felt I was better off trusting the medical professionals and not relying on my own unskilled and uneasy fingertips.
But now, conducting my own breast examination, I did feel something out of the ordinary in my left breast. It was a hard mass in the upper outer quadrant, almost into my arm pit. And it hurt when I prodded it. That night, I asked my husband to feel it, too. He said he didn’t think it was anything to worry about. But I had a bad, bad feeling.
A Surreal Experience
The ultrasound turned out to be a horrible experience, but not because of the procedure itself, which was quick and painless. Afterwards, the radiologist came in to talk to me. He said the suspicious area (which was exactly the spot I thought it would be) would need to be biopsied. I was sent to a room with someone called a “breast care coordinator” whose job it was to schedule the biopsy and tell me what to expect when I had it. I won’t go into all of the details of that conversation, but suffice it to say this person should not be allowed direct contact with patients ever again. I left that room in tears with the understanding that I more likely than not had breast cancer, potentially Stage IV cancer, but, hey, if I thought I was having a bad day, I should be heartened knowing that I didn’t have to go home and deal with HER horrible children. I am not joking.
The next day was the annual Blesie Tree Walk, a fundraiser for cancer patients that my husband, sister, and I previously signed up for. My mom’s oncologist was there, too. At one point, I pulled him aside to tell him I was scheduled for a breast biopsy on Monday. He promised that he would be my doctor if I needed him but assured me that most biopsies turn out to be negative. I felt much better after talking to him.
After an anxiety-filled weekend, I went in for the biopsy on Monday afternoon. Before the procedure started, I asked the technician about the “more likely than not” comment made by the “breast care coordinator” during my last visit. Rather than give me the noncommittal answer I expected – something like “we won’t know for sure until we do the biopsy” – she gave me a percentage – it was 95% likely that I had breast cancer. When the radiologist came in, he was a bit more reassuring. “I’ve done thousands of breast biopsies,” he said. “Sometimes things that I’m sure are cancer turn out to be nothing.” “Thank you,” I replied. “That’s the kind of thing you should be telling people.”
By the time I got the call on Tuesday afternoon, I was expecting the worst. And the news was bad. I had invasive lobular breast cancer. I called my husband at work, and he came home right away. We both were numb. It was surreal.
After the Diagnosis
Somehow, some way, without having slept – or eaten – in days, I managed to get up the next morning and make it to campus for my 8:00 a.m. class. I then managed to fake my way through the next hour and 15 minutes as the cheerful, engaged instructor I once had been. After class, I went to my supervisor’s office and told her my news. We were four weeks into a 15 week semester, and I didn’t know what the next 11 weeks would bring. I knew I would need surgery – and time off for that – but had no idea what would happen following surgery. Radiation? Chemotherapy? My supervisor was great and offered to find someone to cover for me for a week or two or even for the rest of the semester, whatever I wanted to do. I told her I would let her know; I needed more information first.
(By the end of that week, I decided to let another instructor take over my class for the rest of the semester so that I could concentrate on my recovery. I also wanted to minimize any student concerns about how my extended absence might impact their grades. I will return to teaching in the spring.)
On the way home from what would be my last class of the semester, I got a call from Mona, the breast care coordinator assigned to my case. This was a different person than the horrible woman at the radiology center, and Mona is deserving of her title. It would be her job to assemble and coordinate the team of health care providers that I would need to see me through this strange new journey. The first step would be for my husband and me to meet with her at the community cancer center for “breast cancer education.” We made an appointment for the following day.
The next weeks are a blur of medical appointments, consultations, and procedures. I met with my surgeon and oncologist (my mom’s doctor agreed to take my case even though he isn’t accepting new patients). I broke the news to my father. I had a breast MRI. I had a mastectomy and overnight hospital stay. I went home with a drain tube sticking out of my chest. I had a late night trip to the ER when the surgical site became infected. I’ve met at various times with a radiation oncologist, a psychologist, a social worker, a physical therapist, and a trainer. I had a bone density scan. I have something called a lymphedema evaluation coming up. I’ve been poked by more needles than I care to think about.
I have a huge, ugly scar across my chest where my left breast used to be.
Some Good News
Finally, I started to get some good news. First, I learned that lobular breast cancer tends to be less aggressive and slower to spread than the more common ductal breast cancer, which is what my mother had. Lobular cancer can be more difficult to detect on mammography because of its shape and where it originates (in the milk-producing glands, rather than the milk-delivering ducts). By the time my tumor was discovered and removed, it already had grown to an alarming 3.8 centimeters in size. (Breast cancer tumors between two and five centimeters in size are considered Stage II cancer even if the cancer has not spread beyond the surrounding breast tissue.) But as one radiologist told me, it was a very good thing I went with the 3D mammogram this year. My cancer was caught before it had spread to the lymph nodes, which improves my prognosis considerably.
Second, my surgeon was able to remove the tumor with clean margins. Because the whole breast was removed and the cancer had not spread to the chest wall or the lymph nodes, I will not require radiation therapy. And no radiation should improve the outcome of eventual breast reconstruction surgery.
Third, my cancer was hormone receptor positive, meaning that tumor growth was fueled by the female hormones estrogen and progesterone. This is good news because the cancer can be treated successfully with hormonal therapy. For the next 10 years, I will take a drug known as an aromatase inhibitor, which blocks the effects of estrogen on cancer cells and reduces the risk of cancer recurrence. It is a pill that I will take orally every day. No needles, no ports.
Finally, my oncologist ordered an Oncotype DX test, which analyzes the tumor and predicts the potential for cancer recurrence. (Warning: This test is expensive, even if it’s covered by insurance; my 20% co-pay was over $800!) My recurrence score was a very low 7 out of 100 – the lowest my oncologist’s nurse said she has ever seen. This score puts me at a less than 6% chance of distant recurrence within the next 10 years. Because of the low risk of recurrence, I will not benefit from chemotherapy. Let me repeat that: No chemo! No hair loss, no nerve damage, no other horrible things that go along with chemotherapy.
Counting My Blessings
So here I am, nearly two months out from that fateful day after Labor Day when I got “the call,” and I’m counting my blessings. Sure, I’m down one boob, but I get to keep my long red hair, which I’ve always kind of thought of as my super power. Truthfully, it would have been much harder to lose my hair than it was to lose “Lefty.” (Lefty was a whore, anyway, as it turns out.)
I have my wonderful, supportive husband, who has been by my side this entire time, who attended all of my appointments and procedures with me, and who learned how to pack a wound when my surgical site became infected. (I know he promised for better, for worse, in sickness and in health, but wound-packing? That’s going above and beyond as far as I’m concerned.) I still have a pretty good shot at growing old with this awesome guy and doing all of those things that we plan to do someday when we retire. And believe me, there were several dark days there in September when I was convinced that we would be cheated out of that time.
I have a great support network of family and friends. My peeps texted words of encouragement right up until the time I was wheeled into the operating room. They visited me in the hospital and after I got home. They called and texted frequently to check up on me and to see if I needed anything. They brought and sent flowers, food, treats (hello, chocolate-covered strawberries!), booze, books, cards, and keepsakes reminding me to stay positive and strong. And they let me know in a million different ways that they love me and are there for me.
One dear friend, a breast cancer survivor herself, left a foam “falsie” in my mailbox one day. That was probably the best gift of all because it has allowed me to be less self-conscious of my new, weird body until I am healed enough to get fitted for a proper prosthesis. She also has volunteered to come along and help me with that fun task when I am ready.
I have old friends with whom I’ve lost touch over the years who reached out when they heard my news.
I have friends old and new who are breast cancer survivors who have been willing to share their stories and advice regarding their cancer journeys to help me cope with mine. I feel a special kinship with these women; we are all part of the same exclusive club now.
I have good medical insurance and a healthy health savings account to cover my medical expenses. It’s difficult to imagine what it must be like facing a cancer diagnosis without those benefits. I am convinced now more than ever that healthcare should be a right, not a privilege.
I was able to take time off from work to concentrate on my recovery. As a freelancer and adjunct instructor, I don’t have paid leave benefits. I am incredibly fortunate that I don’t need them. Again, it’s hard to think about what a cancer diagnosis must be like for someone who has to work in order to live. Paid leave benefits sure would help.
And here’s a good one: I used my breast cancer diagnosis to get excused from jury duty!
I could go on and on. Each day since I started on this journey, I have tried to focus on all the positive aspects of my breast cancer diagnosis. Sure, sometimes the best I could come up with was “If I die from breast cancer in the next 10 years, I won’t need another colonoscopy.” Yeah, that was a bad day, but hopefully those dark days are behind me now. And no matter what happens, I intend to keep counting my blessings.
My Advice for Coping With Breast Cancer
Statistics say that one in eight women will face a breast cancer diagnosis in her lifetime. When that horrible news comes, it does help to hear from others who have been there before you. Here are a few takeaways from my story that may help you:
Check those girls monthly. I thought I didn’t need to do monthly self breast exams because I wouldn’t be able to distinguish between my normal lumpy breast tissue and something that wasn’t supposed to be there. Guess what? I could tell the difference right away. Had I been doing monthly self exams, I may have noticed the tumor sooner, before it had grown into a Stage II tumor, and given myself an even better prognosis.
Get the 3D mammogram. If you have an option for a 3D mammogram, take it, even if it isn’t covered by your insurance. The better imaging allows doctors to see things they can’t see with a normal mammogram. The 3D mammogram I had this year may have saved my life.
Take someone along. Select someone – your partner or a trusted friend or family member – to act as your support person and accompany you to your medical appointments and procedures. You will get a lot of information at these appointments and will be asked to make a lot of decisions. Sometimes, especially when given bad news, your brain will fixate on what you just heard and shut out anything that comes after. Your support person will help you remember what was said and evaluate the information you are given.
It’s also helpful to take along a small notebook and a list of any questions you have.
Educate yourself. “Knowledge is power,” my oncologist told me when he learned I was researching information about my cancer and its treatment. “Keep reading.”
Read what you can about the type of cancer you have. At a minimum, you will get some grasp of the terminology so you can better understand what your doctors are telling you. More importantly, you will learn what questions you should be asking and what you should know as you consider various treatment options.
During my breast cancer education meeting with Mona, I received a copy of the Breast Cancer Treatment Handbook, a hefty, textbook-size paperback with tear-out worksheets in the back. If you get something similar, read it cover to cover. Then seek out additional resources to answer any questions that come to mind. Just make sure to use reputable resources. I have found good information through organizations like the American Cancer Society, BreastCancer.org, and Mayo Clinic.
Take control. Late one night when I couldn’t sleep, I went to the online Amazon store and entered a search for books about cancer and nutrition. The first book that came up in my results was called Anticancer: A New Way of Life, by David Servan-Schreiber, a doctor who battled brain cancer for two decades. The reviews were overwhelmingly favorable, so I ordered the book. When it arrived two days later, I read it in a weekend. For the first time since my cancer diagnosis, I felt like I had regained some control over my life.
More than just a nutrition book, Anticancer outlines the role that environmental and lifestyle factors play in the development of cancer cells and offers science-based strategies for preventing the growth of cancer. It’s not just a resource for cancer patients, but for anyone interested in adopting a healthier lifestyle. I have recommended it to numerous people since I read it, including my oncologist, and I recommend it to you.
When I read this book, I felt like I had regained some control over my life. I have since recommended it to numerous people, including my oncologist.
Focus on the positive. One of the key takeaways from Anticancer is the mind-body link between cancer and stress. Eliminate the negative from your life as best you can, or at least find ways to better cope with it - through exercise, meditation, therapy, or whatever works for you. Embrace the power of the positive. Count your blessings.
© 2016 Deborah Neyens