The Voice Behind You
We have a simple patio in our backyard. It is in full shade by about five o’clock. When there’s a light breeze, it’s divine. My neighbor and friend, Amy gave me tiny, baby honeysuckle plants a few years ago. I planted them against a fence on the corner of the patio. These plants are now wild vines with cheerful, bright orange blossoms. They weave in and out of one another, bumping up against our furniture, and back over the fence again. I love this happy chaos.
And I’m not the only one. This spring and last, birds have nested in the shelter of the shady vines. Sometimes, Ty and I sit in chairs next to the honeysuckle to share a glass of wine and conversation. We hear the teeny cheeping of the infant birds hidden deep under the leaves. We listen for bumblebees buzzing from one blossom to the next, gathering nectar. And occasionally, if there is magic in the air—we catch glimpses of a hummingbird.
Recently, Ty and I sat in our chairs at the end of the day. I heard it before I saw it: the whirring of wings. A tiny hummingbird dropped down right between us. We stopped talking. We stopped moving. We stopped breathing. We just watched.
She flitted towards me and paused, floating in in the space right before my face; stationary. She was so close that I could feel the breeze off her wings ruffle my hair. Her bright, black eyes peered at me. I noticed the green sheen of her belly, turning violet up by her throat. Her delicate, long beak danced as she moved her head back and forth, taking me in. I gazed into her inquisitive, avian eyes for what seemed like an eternity.
It was a remarkable moment. And just like that—she was gone.
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I was diagnosed with Inflammatory Breast Cancer in April, just five weeks after my double mastectomy surgery. I wish that the name of this disease could be changed because it sounds like “breast cancer that’s inflamed” which is not accurate. It should be named something like, “Super Fast-Moving, Scary Cancer that Starts in Your Breast.”
I’ve learned so much over the last few months. Let’s start at the beginning:
Put simply, Inflammatory Breast Cancer (also called “IBC”) is a rare and aggressive cancer of the breast that invades the lymphatic fluid and the dermal layer of the skin. The cancer cells block or “plug up” the lymph system, which is why IBC often presents with a red rash. This is different than metastasis to the lymph nodes and skin—IBC starts there.
IBC is more commonly found in women under the age of 45. It comes on very quickly—days or weeks. One in three patients will be stage 4 by the time they are diagnosed, meaning cancer has already spread to distant parts of their body. The prognosis for IBC is not the same as more common breast cancers. Historically, about 40% of patients diagnosed with IBC will be alive in five years. Thankfully, advances in care are helping patients to live longer… up to 70% of Stage 3 patients and 50% of Stage 4 patients now survive the 5-year mark. (To be clear: I mean 5 years after being cleared of the disease.)
Part of the reason for this poor prognosis is due to the misdiagnosis rate: 9 out of 10 Inflammatory Breast Cancer cases will be misdiagnosed at the start, and because it’s so fast-moving, there is often time lost or inappropriate treatment given.
IBC often doesn’t present with a typical “lump”. There are signs: red rash, the thickness of skin (almost the consistency of an orange peel), pain, inverted nipple. These are the hallmarks—of which I had none.
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Early on, when we thought I had a more common breast cancer, I consulted with two different surgeons. The first recommended that I have my mastectomy before my chemo. I met with him on a Monday morning; he could squeeze me in for the operating table by the end of the week. I don’t want to risk taking any longer with this cancer, he said. What I know is this: you have a lot of cancer and we need to get it out as soon as possible.
The second surgeon disagreed. He felt that I should have chemo first and then he’d perform surgery after chemo was complete. How else will we know if your tumor is shrinking, Sarah? How will we know if the chemo is working? We need your tumor to be as small as possible to make your surgery as successful as it can be.
It was an enormously stressful decision. Deciding which treatment plan I would choose was a heavy weight on top of the already overwhelming news of a cancer diagnosis.
I’m not a cancer doctor. Why am I making these major treatment decisions? I asked Ty.
I talked to a few previous patients. I ran it by my friend who is an oncology nurse. We prayed. And then I took my best guess and decided to go with the second surgeon. We did chemo first. We figured we’d shrink the tumor and give us the best chance for surgery.
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As it turns out, an Inflammatory Breast Cancer diagnosis changes your treatment options—there are no options. If I had known this was IBC from the start, there would have been no treatment decisions to make. They are made for you; there is only one path.
The first decree is this: you do chemo first—no questions asked. This is your best chance of survival.
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After chemo was finished, we had to make decisions about surgery.
Our post-chemo scans showed no visible cancer. The tumor had shrunk. Surgery was going to be easier than we thought, so the conversation of lumpectomy came up again. Maybe I didn’t have to do a whole mastectomy! Wouldn’t that be amazing?
I cannot overstate how frightening it is to voluntarily have your breasts removed. (You can read about that here.) I started talking to people and doing research on percentages of long-term survival, recurrence, and all the cancer things. After all of my questions to doctors and phone chats with women that had walked these roads before me, I decided that mastectomy seemed like my best option. As much as I hated it, it felt best. I mentally set it before me, breathed deeply, cried a lot, and prayed for peace.
Most women choose to have reconstruction at the same time as their mastectomy, so when you wake up from your surgery you already have the start of your new boobs (called expanders) in place. It was the same story again: I connected with women who had done expanders at the time of surgery, women who had waited and done reconstruction later, and women who had chosen to go flat. I asked a lot of questions about their experience and if they would have done anything differently. After wading through all of the information, I decided to stay flat. I knew it was best for me… but it broke my heart.
The day after my surgery, I sat up in the hospital bed as my Nurse Practitioner slowly peeled the bandages off my chest. As she carefully and gently removed the gauze, I sobbed. The tears flowed down my face, over my shoulders, and down onto those bandages—I couldn’t hold them back.
Sometimes what is best doesn’t feel good.
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A few weeks ago, I connected via phone with an IBC survivor who has been NED for two years. (NED is cancer vocab for “No Evidence of Disease.” NED is our goal).
She heard my story and started asking some questions about my treatment path. When we got to her questions about what I did for reconstruction, I told her that I chose to stay flat.
She paused. Then she said:
That decision probably saved your life, Sarah.
Because Inflammatory Breast Cancer Decree Numbers Two and Three are this: You do a full mastectomy with no reconstruction. You stay flat. There is no other choice. This is your best chance of survival.
Little did I know.
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Two verses from Isaiah speak over my cancer journey. The first has been a favorite for many years:
Whether you turn to the right or to the left, your ears will hear a voice behind you saying, “This is the way; walk in it.” -Isaiah 30:21
I am comforted that even when I don’t feel confident in a direction; even when I’m taking my best guess... whether I turn right or left, I am guided in those decisions. I don’t have to rely on myself, which in some sense relieves the pressure.
Recently, I came across this second verse from Isaiah:
This is what the Lord says—
your Redeemer, the Holy One of Israel:
“I am the Lord your God,
who teaches you what is best for you,
who directs you in the way you should go.
-Isaiah 48:17
It’s true: I’m not a cancer doctor. I’m not an oncologist or a radiologist or a breast surgeon. I have no clue what I’m doing.
What do I have, though? I have a friend who knows what is best for me, even when I don’t. He is saying: walk this way. Choose this thing. It’s only in retrospect that I can see just how critical these directions were…
They may have saved my life. I suppose only time will tell.
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Because IBC infects the skin, I didn’t have enough skin removed during my first surgery. I’ll likely need another. I’ll have a large square of my chest skin removed—hoping we get all the cancer this time.
Where we stand right now, there are more questions than answers. When should I have another surgery? And what kind of skin graft will they need to do? And how do we radiate a skin graft without it deteriorating the skin and my body, opening me to a risk of infection? Do we radiate as we always would, or does something more intense need to be done?
We are in a holding pattern. We can visually see the rash diminish and can feel the cancerous nodules shrinking beneath the skin, thanks to the medications I’m on. Hallelujah. But according to my Oncologist, we don’t want to wait so long for surgery and radiation that it gives time for “the cancer to outsmart the therapy.”
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Soon after my hummingbird encounter, Spotify notified me that one of my favorite artists had a new album release: Canyon by Ellie Holcomb.
As I listened to the album at work, I was struck by the lyrics to one song in particular:
I Don’t Want To Miss A Thing
Your voice is a burning bush
Your voice is a million things
Your voice is the sound of thundering hooves
Your voice is a hummingbird's wings
And I don't want to miss it
I don't want to miss a thing.
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Ty and I find ourselves walking back through another open door. We heed the voice behind us, and we head back out to Houston in August for a couple more appointments at MD Anderson, where we’ll meet with their Radiation Oncology team and their Breast Surgery team. We are hopeful for answers.
Regardless, the hummingbird reminds me: Be at peace: You’ll get direction when you need it.
PS When we were last in Houston, I met Terry Arnold, IBC survivor, and NED 15 years. She started a foundation focused on education and fundraising for the research of Inflammatory Breast Cancer. I’d love for you to check it out, and if you feel so led, donate. We IBC folks need all the help we can get:
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