the smell of my desperation has become a stench

The Avon World Sales Leader, another side

Back in April my mother The Avon World Sales Leader got a card in the mail from her healthcare provider reminding her that it was time to schedule her yearly mammogram. But she was busy, of course, busy saving the world while attending to every single need of every single grandchild and restructuring the entire organization of the Mormon Church (if you’re not going to give women the priesthood then just be courteous and get out of their way while they take care of everything, thank you very much [those are not her words, they are mine, but she is secretly nodding and resenting me for it]), and so she set the card aside.

A few months passed when in August she was organizing her house in advance of my cousin’s wedding. Ten members of our extended family were coming to stay at her house (GO GO GADGET BLOW UP MATTRESSES!), and while rifling through a stack of paper on her desk she stumbled across that card. At first she looked at it and thought, “Eh… I don’t have time. I’m just too busy.” But the more she organized her desk the more that card loomed in her brain. She finally and reluctantly gave in to a nagging feeling in her gut and made an appointment just seven days before hosting those ten family members, before organizing and cooking a dinner for over 50 people. 

What follows here is what my mother wants you to know most about what she has been going through ever since that appointment in August. I had her over for lunch a couple of weeks ago, opened a voice memo app on my phone and told her to start talking. Yes, this is long. It is long and detailed and at times uncomfortable. But please read this and forward it to every woman you know who could benefit from these words. You might very well be one of those women.

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I can still remember the pain I felt on the last day of that walk. It was the first 3-day walk Avon had ever done to raise money for breast cancer. It was 1999. I was up and on the road at 4:30 AM walking by myself. By then my feet were blistered beyond recognition, and I was aching all over. We’d already walked 40 miles in two days, and I wanted to get an early start and walk as much as I could, you know, without falling over from the pain.

But I remember letting the pain wash over me because I knew it was pain that would end. Because all the people we were walking for… well… for many of them, their pain would never end.

There was this one kid, and we’d see him each day at about eight o’clock in the morning standing beside the road. He’d watch us walk every day, and on that last day I stopped and started up a conversation with him. He said, “My wife died of breast cancer. We’d only been married three years. They won’t let men participate in this walk, but I can come out here and support you who are walking. I can’t tell you how much I appreciate it. Thank you. Thank you so much.”

I remember finishing that walk and going back to the hotel, getting on a plane and flying home. I remember seeing [my stepfather] at the airport and the emotion was overwhelming because of the immersion I’d had for three days walking for breast cancer. I raised $3000 by asking each of the representatives in my division to donate a dollar and to write a little note about someone they knew or anything they had struggled through, anything that would inspire me. I kept all the notes in a fanny pack and sometimes when I could hardly walk, I would stop and read them. And it kept me going. All these women helping me, another woman, to walk to help more women. I loved every minute of it.

I never dreamed that experience would have such a personal meaning to me now.

Little did I know that almost seven years into retirement I would have such a personal knowledge about this. That whole time I was just an outsider who could only imagine how they felt. 

Now I’m an insider.

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When I saw that card reminding me of my mammogram I really wanted to throw it away. I’ve had a mammogram every year for how many years? I’m so busy. I have too much to do. But something wouldn’t let me throw it away. So I called and made an appointment seven days before your cousin’s wedding… yeah… two days before the wedding is when I got the call that there was a suspicious shadow on the film, and they needed me to come in for more tests. I went in and had another mammogram and an ultrasound. That’s when they told me that they had found *it* and needed to do a biopsy. *It* was small, but I shouldn’t put off the biopsy, and I was like, I HAVE TEN PEOPLE COMING TO STAY AT MY HOUSE DO YOU UNDERSTAND THIS? Who has time for a biopsy?

(Normal people dealing with my mother must be like, “This shit is crazy.”)

So I hosted those ten family members and cooked dinner for 50 people and didn’t tell a single one of them what was going on. I didn’t want to bring anyone down. It was a wedding, after all, but it’s all I could think about. And once it was all over I went in for the biopsy, and the doctor told me it looked like what he had seen over 3,000 times: it was most likely cancer. Within three days we found out… it was cancer, and I went in to see a surgeon.

My journey began.

You know, I have never been sick. I have never been sick. You ever remember me being in a hospital? I don’t get sick, Heather. You know I walk four miles every morning. OH BY THE WAY. You had better clear that up with your readers.

(She is referring to the time I mentioned that she averages 16,000 steps per day on her Fitbit and that she walks those steps mostly around her house. I guess it’s illegal to exaggerate, SO LET ME CLEAR THINGS UP: she gets up every day with my stepfather and they take a four-mile walk. But here’s the thing! Four miles doesn’t even get you to 10,000 steps. She is still walking another 6,000-7,000 steps somewhere. I’m going to go ahead and guess that somewhere IS IN HER HOUSE.)

I’m healthy. I have the energy of someone half my age. My goal is to stay this energized so that I can enjoy this wonderful life I have. And I think that’s been one of the hardest things with this, fighting the fatigue, fighting the physical and mental fatigue that comes with the weight of this. There’s this loss of… modesty is not the word… there’s this intimate way your doctors become involved with you, that they have to become involved with you. I have three different physicians who know me intimately, whereas before this part of my body was so off limits. It’s mine, it’s private, it’s sacred, and all at once I’m open to the world. 

Yesterday in radiology I was lying there with three individuals around me, my breast lying out to the side of me, and one of them was taking a picture of me for my file, and the other one was tattooing things on me and putting stickers on my boob. 

You lose your privacy. It can’t be a worry.

I got through that first surgery, and I felt such a sigh of relief. It really did feel like I was going to be fine. There was a tiny outside chance that he might have to go back in if the margins weren’t clear of all the cancer cells… sure enough, he called to tell me that they weren’t clear. So I went back through that whole procedure, getting up at four o’clock with the anxiety of not knowing how things would turn out, looking from the outside of my body at everything that was happening to me, as if I were watching someone else. Someone else was lying there. How could this be happening to me?

After the second surgery the margins weren’t completely clear. Again. Again.There were still cancer cells near the skin that they could not get. So what started out as a little incision… I now have a dent in my breast.

My official diagnosis is: stage one, early-invasive cancer.

It is not a genetic cancer. It is estrogen-driven. I will be on an estrogen blocker for the rest of my life. And you go, wow, that’s great. That means that it’s treatable. And it’s less than two centimeters, and it’s not in the lymph nodes, and all is well. Celebrate!

Except… the stage of cancer is based on where it’s located, how big it is, whether or not it infected the lymph nodes, and were they able to remove it? That type of thing. When I went to see the oncologist he was concerned that it might come back systemically throughout the rest of my body. He said that the grade of my cancer was in the gray area. The grade of cancer is the molecular makeup of the cancer. Is it an aggressive cancer? They rate it on the scale of 1-5. Mine is about a 3. 

My oncologist and I had to make a decision as to whether or not we thought chemotherapy could lower the risk of it coming back someplace else.

There is a test called the Oncotype DX test that examines the tissue from the tumor and predicts the likelihood of chemotherapy benefit on that tumor as well as the benefit of chemotherapy in a ten-year risk area.

The grade of cancer I have likes to come back in the bones and the lungs and the liver.

But my risk level is between 17-20 percent that in the next ten years it might come back someplace else. We had to make a decision based on this test, and for me it would only increase my benefit by about there percent. It was not worth it for me because of the side effects, especially at my age.

So, going forward, I met with the radiologist. She explained everything that is going to happen, the 32 sessions of radiation that will finish the day before Thanksgiving and the accompanying physical fatigue that will knock me to the ground, the dizziness, the nausea, the dryness and blistering.

(My mother is currently nearing the end of the second week of radiation treatment and has experienced all of this times ten. But I just looked at my Fitbit app, and OMG WTF. My mother is undergoing radiation treatment FOR BREAST CANCER and her weekly average HAS GONE UP. It’s now at 17,000 steps. Dude. Mom. Whoa. When I confronted her about it she reiterated that walking is helping to clear her mind and process everything. But… GO TO A SPA TO DO THAT. LISTEN TO SOME CELINE DION. I HEAR THAT THE MORMON TABERNACLE CHOIR IS QUITE SOOTHING.)

You know, breast cancer hurts physically, but not the breast cancer itself. It’s the procedures. The multiple mammograms hurt. The biopsy hurt. There are a ton of needles, they pull out tissue, they stick wires into your breast. They shoot radiation into your body. It’s so invasive.

I’m so grateful for my team of doctors. They have shown such tender care of this condition. They understand what it does to women. [My stepfather] is a cancer patient, we’re not strangers to cancer. But I know more about my breast cancer than he ever knew about his lymphoma. And it’s because it’s been six years. So much has happened in the cancer research community, and we know so much more about cancer and its treatment. As a patient I feel so informed about what I can expect. 

My greatest fear is that it’s going to come back.

You know what else I’ve also learned about cancer? It’s stealth. It is a stealth disease. It is so under wraps that it has invaded you before you even have a clue. The greatest instrument we have in detecting breast cancer is mammography.

If I had waited another year this could have been fatal. The doctor says it could have quadrupled in size by next year.

Let me tell you another thing…this has already cost me a bit of money. What do people do who are in that… hmm… who don’t have government assistance, who are hard working people, who just don’t have $1000 lying around in a month to pay for four $225 copays? My insurance will pay for 80% of radiation, but I’m going to end up spending $10,000 after all is said and done. And I have really good insurance. Really good. What do people do? I had never been forced to take up that concern, and now I think about it every day.

Those people will die.

If I have a message to anyone it’s, “Get your yearly mammogram.” Because it can come so quickly. Some patient of my radiologist said, “I can’t believe I have cancer, I’ve had a mammogram every year for five years!” As though mammography prevents it. It doesn’t prevent it. It discovers it. My self exam would not have detected it because it was too small. Because they caught it they were able to eradicate it in the breast. I didn’t have to have a mastectomy. And now we can be on high alert for the rest of the body.

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This condition invades one of the most private parts of your body, one of the most beautiful parts of your body, a part of your body that IS womanhood. From nurturing and feeding your child to the intimate pleasure that is gained with your partner. It invades that, and it’s ugly. It’s vile.

When I first started facing this, I thought, “I can do this. I am strong.” And I am, and I have faced it. However, it has been harder on my emotions than I wanted it to be. And I’m scared. I don’t scare, Heather, you know me.

My fear is that it will come back and shorten my life, my wonderful, energetic life filled with so many more memories than need to be created with my grandchildren.

But I refuse to let the emotional morbidity define me. I am not Linda Oar who has had breast cancer. I am Linda Oar who has gone through some hard things, but I’m going to come out the other side regardless of what happens, strong and knowing that this is a bump in the road, a hiccup in life. We all have them. I just happen to be one of every eight women who has had to face this very specific hiccup.

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Just for your reference, here are some hard statistics on breast cancer:

– Breast cancer is the number one occurring cancer in women. Every three minutes a woman is diagnosed with breast cancer.

– Breast Cancer is the number one cause of death among women 35-54 years of age.

– In 1961 breast cancer incidence was 1 in 20 women; today it is 1 in 8.

– One woman is diagnosed every three minutes in the U.S.

– One woman dies every 12 minutes in the U.S.

– About 85% of breast cancers occur in women who have no family history of breast cancer. These occur due to genetic mutations that happen as a result of the aging process and life in general, rather than inherited mutations.

– Breast cancer requires more surgical operations than any other disease.

– Breast cancer is the most costly cancer in physician and hospital bills

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In honor of my mother and what she has been through in the last three months and what she faces for the rest of her life, I’ve made a $250 donation to The Avon Breast Cancer Crusade. Avon is the leading corporate supporter of the cause globally. My mother spent her entire career with Avon immersed in this cause not ever knowing that she would be one of the women to benefit from the services that they fund.

I’d love it if you would join me in donating any dollar amount you can afford.

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Don’t put off your yearly mammogram. Thank you, Mom. You are the bravest person I know.

Heather B. Armstrong

Hi. I’m Heather B. Armstrong, and this used to be called mommy blogging. But then they started calling it Influencer Marketing: hashtag ad, hashtag sponsored, hashtag you know you want me to slap your product on my kid and exploit her for millions and millions of dollars. That’s how this shit works. Now? Well… sit back, buckle up, and enjoy the ride.

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