How Getting Breast Cancer Helped Me Connect with Patients

How Getting Breast Cancer Helped Me Connect with Patients

At work yesterday I walked into the room of one of my patients in response to his call light, asked him how I could help, smiled and looked him in the eye, as usual. Overcome with emotion, tears sprang to his eyes as he explained that he just felt so anxious and overwhelmed at learning a few moments ago that the surgeon would be amputating his big toe today. He had known he was having surgery, but not until today had they mentioned amputation.

“It’s just a toe, but still. It’s part of my body,” he said.

I stopped what I was doing, came around to the bedside and placed a hand gently on his shoulder. I looked into his eyes and told him that I understood and I was sorry. And while I have always been an empathetic person, easily able to put myself in another’s shoes, now I actually do completely understand what it feels like to have a part of your body amputated.

I shared with him that I too had recently had part of my body amputated. Both my breasts, in fact. A bilateral mastectomy.

Breasts are not the same as legs, arms, feet or toes. In some ways they seem less important, and in some ways even more. Breasts are perhaps the most defining characteristic of the female body. And yet seven weeks post op, no one even knows I have “robo-boobs” unless I lift up my shirt (which thankfully my job neither requires nor allows).

I don’t even mention it to most patients. Unless they notice me struggling to reach up above my head. Or unless it seems fitting or important to share. My own pain, my own experience as a patient, will make me a better nurse.

So much more I want to share, but another 12-hour shift beckons, and it’s been so long since I have even posted anything, that I figured something is better than nothing. More to come. I promise.

How 20 Minutes with my Oncologist Validated my Decision to get a Double Mastectomy for a Stage 0 Cancer

How 20 Minutes with my Oncologist Validated my Decision to get a Double Mastectomy for a Stage 0 Cancer

As we followed the medical assistant back to the oncologist’s office, I couldn’t help but notice the curved row of recliners right in the main central corridor of the clinic.

They looked out a huge wall of glass to the gorgeous rain-soaked North Scottsdale desert. Were it not for an IV pole perched next to each lounger, a bag of clear yellowish liquid hung and ready to be infused, this area could have been a nicely-appointed nail salon.

But I knew what it was. My husband, Michael knew what it was. This was where cancer patients received infusions of chemotherapy that would kill their cancer cells, along with many of their healthy cells, causing gastrointestinal distress, hair loss, fatigue, and all the other symptoms synonymous with cancer. We passed wordlessly, and I felt both grateful and guilty that I wouldn’t have to sit in one of these chairs as part of my treatment.

Dr. Brendan Curley entered the room cheerfully, his warm smile reaching right up to his blue eyes.

He shook our hands firmly, introducing himself, then said to my husband, “And you are…?” We laughed as he explained that he didn’t want to assume he was my husband rather than my father, son, boyfriend, or something else. We shared stories of mistaken identity and awkwardness upon assuming the wrong relationship. I once assumed my patient’s girlfriend was his mother and he once assumed a patient’s daughter was his granddaughter. So, we both had learned never to assume.

And then, before getting into any details, as if he wanted to relieve any fears up front and make me feel at ease right away, he said with a smile, “Want to know what my treatment plan is for you? None. There is none. I don’t ever need to see you again.”

Nevertheless, he took a few minutes to get to know me and really listened to my story.

When he heard I was in nursing school, and also working for HonorHealth, he suggested maybe I could come work with him after I graduate. I think I just might do that! He was professional and friendly, warm and personable. Our consult felt like a chat with an old friend. I have met very few doctors who made me feel so valued, important and cared for during a routine consultation. 

After he listened, he spoke. And this visit – these 20 minutes with the oncologist who I never have to see again – confirmed and validated my decision to get a bilateral mastectomy for a Stage 0 cancer.

I knew for sure I had made the right decision, even though it was (still is) painful and a lot less fun in reality than I had imagined…

He carefully outlined the options I could have taken and what the treatment protocol would have been with each of those options.

Since the kind of cancer I had, DCIS (Ductal Carcinoma in Situ) is Stage 0 noninvasive cancer, chemotherapy is almost never part of the treatment.

Chemo is only ever given if the cancer becomes invasive or is found in the lymph nodes.

But even though my cancer was non-invasive – contained “in situ” within the milk ducts – if I had elected to have just a lumpectomy, he would have treated me with radiation followed by a hormone blocker pill to eliminate recurrent DCIS or a new breast cancer in the same breast or the contralateral breast.

Had I chosen only a single mastectomy…

I would have eliminated the need for radiation and reduced my risk by 50% since I would have removed 50% of the breast tissue, but I would still have needed to take an estrogen blocking pill, Tamoxifen for at least five years to lower risk in the contralateral breast.

But in choosing the bilateral mastectomy…

which removed all of the breast tissue from both sides, I had essentially eliminated my risk. I now have less than a 1% chance of ever in my life getting breast cancer.

And since all my genetic testing came back negative for cancer markers, I don’t have an increased risk for any other type of cancer either.

That doesn’t mean I have a guarantee to never get cancer. Even healthy people get cancer. There are carcinogens in our environment, in our food, and who knows where else. But I can go back to living as healthy as I can and not have to worry.

The oncologist’s office was a beautiful, peaceful and surprisingly positive place. If I had to go there regularly for treatments, it would be a pleasant environment in which to face the pain of cancer treatment. Still, I am grateful that I don’t have to go there again!

I stumbled upon the video below as I was writing this story

I thought it perfectly captured Dr. Curley’s sweetness and authenticity. Growing up in a small town in Pennsylvania, his mom was “everyone’s doctor” and his dad was a cancer doctor in a larger town a bit further away. Dr. Curley’s oncology practice brings together these two flavors of patient care into a warm and friendly experience, even as he helps patients navigate the scariest illness.

And in his spare time, he volunteers at the hospital with his therapy dog, Princess Danger, an adorable English bulldog. . He doesn’t even mention to the patients he visits with Princess Danger that he’s a cancer doctor. When he visits with them, he’s just a sweet, smiley guy who cares.

“Life is about finding people who care. It’s about finding people who are going to take the time, finding people who essentially are going to treat you like family,” he says. 

“Life is not about extending days. Life is about adding moments.” 

And I won’t soon forget the few moments I spent with Dr. Brendan Curley. If you have to have a cancer doctor, Dr. Brendan Curley is a great one.

 

Thankful for Silver Linings and Dancing in the Rain

Thankful for Silver Linings and Dancing in the Rain

I wrote this article to be published in the January issue of Las Sendas Life magazine, which is distributed in hard copy form to the I-don’t-know-how-many thousands of residents in our community each month. It’s basically an intro to my Breast Cancer journey and a hint at where I’d like to go from here. I’m so grateful to the magazine’s publisher, Heather Harrison for giving me another medium to share my message.

None of this will be news to those of you who have been following along since I started posting about this almost exactly two months ago, but I figured it’s a good place to start as I attempt to go back and fill in the details of the story.

People have told me they are impressed by my openness, my positivity, my courage, even if some of them think I’m crazy for blabbing about my personal business to anyone who will listen. And I have said again and again that it’s easy to be positive when I feel so lucky, when my cancer was so minor, when I really wasn’t sick and didn’t have to sacrifice anything.

They have told me not to minimize my pain, my experience. Facing cancer and getting both your breasts amputated actually is a big deal!

But I have felt so guilty, when others die from this disease and I was prepared to suffer, but didn’t have to. 

Yet I realized, after connecting to an old friend at a party the other night, my first social event since the surgery, that this is about more than just me. She shared the terrifying experience of her own recent biopsy (which turned out benign) and we laughed about how barbaric and uncomfortable that procedure was. “You need to write about that,” she said. And I realized that I have glossed over some of the negative aspects of my experience because they just didn’t seem like that big of a deal to me, and I wanted to jump right away to the positive.

I have watched friends lose parents and children, suffer from autoimmune diseases that in many ways are worse than cancer because they are so undefined and misunderstood. I have seen friends die: from breast cancer or liver failure, accidents, suicide, even murder. Who am I to talk of pain?

But who I am is someone who can give words to my experience and the experiences of others, I can tell the stories of the struggles and triumphs that make us human. It’s what I have always been best at. So I will go back over the events and details of the last few months of my experience and share the details – not just the positive affirmations, but the scary moments too. And I will begin to sprinkle in other people’s stories too. That’s my gift. 

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Getting breast cancer wasn’t in my plans, at least not right now.

I had recently turned 45 and had just begun the second year of a three-year accelerated BSN nursing program. I was working nights as a nursing assistant at a hospital across town and juggling a husband, three kids and a home. I was also helping a Real Estate client negotiate the purchase of a home.

But God didn’t ask me about my timing.

And quite frankly, though I didn’t know it yet, I needed a break from the frenetic pace of my life. When I received the diagnosis of High-Grade Ductal Carcinoma in Situ (DCIS) on September 20, 2019, I felt more relieved than upset. If you were going to get breast cancer, this was the kind to get – the earliest, most treatable form, “cancer-lite.” My mom had received the same diagnosis almost exactly 10 years earlier, and she was cancer-free and thriving.

It wasn’t really a surprise.

While the average woman has a 1 in 8, or 12% chance of developing breast cancer in her lifetime, my risk had been calculated at 36%, due to family history, dense breast tissue, some past lumps that had turned out benign, and other factors. Because of my high-risk status, every six months I went in for either a mammogram/ultrasound or an MRI. When the radiologist said he saw some new microcalcifications on the mammogram that were a bit concerning, I didn’t feel afraid, but immediately scheduled the biopsy he recommended and started researching.

I eat healthy, exercise regularly, keep my weight in check and try to keep stress levels low.

I don’t drink much alcohol. I don’t smoke or take drugs. I use all-natural home cleaning and skincare products, free from caustic chemicals. So frankly, I was a bit peeved to still get cancer. But even though I believe in natural medicine and holistic approaches, and perhaps naturopathic medicine could have erased this cancer, I was tired of being high risk, always wondering if I was going to get breast cancer. Several women I had known had died from this horrible disease. I never wavered on my decision to get a bilateral mastectomy with reconstruction.

It’s a Very Personal Choice. Every Cancer, Every Woman, Every Life is Different.

Although a lumpectomy combined with radiation was an option for me, the bilateral mastectomy mitigated my risk and precluded the need for chemotherapy, radiation or even hormonal treatments common with lumpectomies and single mastectomies. My breasts had served their intended purpose, breastfeeding all three of my children. They had entertained my husband. They had even earned me beads at Mardi Gras in New Orleans in another life…

But they were heavy, with dense fibrous tissue that likes to hide cancers and other masses. And frankly, a new set of smaller, perkier boobs didn’t sound like the worst thing in the world. Silver linings. It’s all about finding the silver linings.

I started sharing my journey online and noticed my writing touched a chord.

People started reaching out to tell me of their diagnoses or struggles, impressed by my courage and positivity. I realized I could inspire others to face their own tough circumstances with courage, laughter and love. Even though not everyone’s prognosis is as good as mine, the attitude we bring to the table – our faith, joy and love, can make a huge difference in our healing process, or in the process of navigating any tough experience.

We are all a Piece of Work, a Work in Progress, and a Work of Art, all at the same time.

It’s a phrase I coined over the past few years as I realized that everyone is trying to figure out and navigate this thing called life, whether they are a child, an adult, a pastor’s wife, a doctor or a world leader.

Forced to take a break from nursing school, I decided to finally finish that book I’ve been working on for years and develop my blog, www.DanielleTantone.com to share stories, educate, and inspire people to live their best life, be their best self, love with all their heart, and find beauty in their darkest days. After all, “life is not about waiting for the storm to pass. It’s about learning to dance in the rain.” – Vivian Green

My breast reconstruction process is ongoing and there will be a few additional surgeries, but today I am thankful to be alive and cancer free.

This will be the first article in an ongoing series focusing not just on breast cancer, but on overcoming. If you have a story – about your own breast cancer journey, another health struggle you’ve already overcome or are still muddling through, or something else you’d like to share with the community, feel free to reach out to Danielle@106danielle.nohassle.website.

 

 

 

A Super-Stretchy Too-Tight Hot Pink Sports Bra Splattered in Black Paint

I really never wavered in my decision to have a double mastectomy,

but as the day approached, and I made my way through my first October – breast cancer awareness month – as a “survivor,” I wanted to have some professional photos taken – something to remember “them” by, and also something to document the process, build awareness, share my journey from “before” to “after,” whatever that was going to look like.

I imagined something artsy, tastefully done, not completely nude, but showing their volume and shape without the constraint of a bra.

I didn’t think to do this until about a week before surgery, but a friend introduced me to a wonderful photographer, Marie. When I told her my idea, she suggested using pink body paint to cover my breasts and then splattering them with black to represent the cancer. So creative and perfect, I thought, and she squeezed me into her busy schedule, two days before the surgery – Monday, October 28.

Although I loved her idea in theory, as the day approached, I grew more uncomfortable with the idea of topless photos, even covered in paint, even in the name of breast cancer awareness. The very idea of being naked in front of Marie as she painted me pink was making me anxious, and I imagined the horror of my teenaged daughters if I published the photos, which I really wanted to be able to do.

The solution was a super-stretchy too-small hot pink sports bra

that my daughter had worn (under her t-shirt) to the breast cancer walk the weekend before. You could still very much make out the lines of my breasts, but my photos wouldn’t be R-rated.

The fact that earlier that day the plastic surgeon had taken a thick purple sharpie and drawn a line down the center of my chest (you can see it in the pictures if you look closely) and big purple parallelograms over each breast to mark where they would cut made the whole thing feel that much more real…

Coconut Bikini Under My Skin

Coconut Bikini Under My Skin

Five Days After my Double Mastectomy…

It’s Monday morning, the fifth day post-op. And I guess it’s time I give you a little update. I have done nothing but eat, sleep, read, watch shows, be pampered by friends and family, and take pain meds on schedule. (He makes me lie down in green pastures…)

The pain is dissipating now, but has been a bit worse than I expected. I have had other major surgeries, including three C-sections, but this was a completely different kind of pain (burning, searing, squeezing, cutting), and without the beautiful bonus of a healthy baby to cuddle with and coo at, and all those feel-good postnatal hormones that come along with giving birth. This pain is very localized, though I’m sure it feels different for everyone. Some women have told me it wasn’t painful at all. I think it’s the tissue expanders that are most uncomfortable for me. Let me try to give you an idea of what it feels like…

You know those ridiculously impractical little coconut bikini tops…

that people bring you back as a souvenir from Hawaii? The bra cups are made from the two halves of a hardened brown coconut shell and they’re tied together with a string? It looks really cute above a grass hula skirt with a colorful lei swaying gently as the hula girl twists and turns gracefully to island music. But not so cute on a regular person, especially one with large breasts. Although I do actually own at least one, I have never actually worn it.

So what exactly does this have to do with a double mastectomy, you wonder?

Well, I feel like while I was asleep, under general anesthesia, my surgeons cut out all that soft breast tissue, as well as much of the skin and other breast parts that encased it, pulled me open and smashed a coconut bikini right into my ribs and chest muscles, strapped it on super tight, and then shrink-wrapped my remaining skin around the whole thing, resulting in the super-sexy look of two tightly-packed mottled round discs where my once voluptuous breasts were, surgical tape covering each of the vertical scars where there used to be nipples. I could feel the hard rim of the coconut bikini cutting into me when I changed position or took a deep breath. Or so that’s how it felt.

In reality, the plastic surgeon placed two breast tissue expanders into the now-empty space. Though they are indeed made from a harder substance than the saline implants that will eventually be in there, I know they aren’t actually as hard as the coconut shells they feel like.

A few people have asked why I need expanders in the first place…

since my natural (big boobs) breast tissue should have taken up plenty of space! But apparently this has nothing to do with the size of my natural breasts. The plastic surgeon said I am very “thin-skinned” meaning once they took out the mammary glands/breast tissue, there’s not much of a fat layer under my skin. It’s nice to know I am skinny somewhere since I’m generally pretty padded. But I guess this means we have to proceed slowly and carefully with the reconstruction process.

It has crossed my mind that maybe it would be better to just stay flat and natural…

but I don’t think that’s the right option for me personally. Even though they’ve done their job and I don’t really need them, women’s clothes are designed for curves

I do feel much, much better today. Like either the coconut bikini has loosened up just a little, the raw flesh underneath is starting to heal, or the expanders (and the meds) are doing their job.

Also, the best news of all is that all the pathology came back and there was no additional cancer besides the one they already knew about. This means no chemo, no radiation and no estrogen-blocking pills that would have brought on early menopause. This is very, very good. Now I’m off to take a nap. More later.

Though I Walk Through the Valley…

Though I Walk Through the Valley…

This post is the transcript of a short speech I delivered this morning at a women’s bible study at our church. The 7-week study started right before my cancer diagnosis and ended the day before my double mastectomy. It played a large part in fueling my peaceful positive attitude over the past few months.

In the first week of September, I returned from a Labor Day weekend trip to San Diego with my family, I turned 45 years old, and I began my second year of a three-year accelerated BSN nursing program. I was working nights as a nursing assistant at a hospital and juggling three kids, a husband and a home. I was also helping a real estate client negotiate the purchase of a home.

I didn’t really have time to start a bible study, and I knew that. But I missed the community of this weekly gathering, and my packed schedule had an opening on Tuesday mornings, so I had signed up for Psalm 23, The Shepherd with Me, led by Yvonne Vail with the book by Jennifer Rothschild. I knew the Psalm well. Green pastures. Still waters. I figured maybe God could show me how to find just a little rest in the midst of my chaotic life. I decided that I would give myself grace and not even try to do the homework, but just show up and be fed. I had no idea just how relevant, timely, and comforting this particular teaching of this beautiful piece of scripture would be to me. I only have a few minutes, not nearly enough time to share all that has happened, but I wanted to share a few tidbits I have gleaned as God weaved these words into my life in recent weeks.

Week One: The Lord is my shepherd I shall not want.

 The second week of September was another busy one. I squeezed in a routine mammogram that Thursday. I had been monitored pretty closely for the past few years due to family history and some issues that had turned out benign in the past. When the radiologist said he saw some new microcalcifications on the mammogram that were a bit concerning, I didn’t feel afraid, but immediately scheduled the biopsy he recommended and started researching on the internet. I thought, “God, I guess breast cancer would be one way to make me lie down and rest. And if that’s what you have for me. Right now. Then Ok, I’ll take it. And I’ll glorify you in it. Because you know very well that there have been other situations in my life where I have utterly and completely failed to glorify you.”

Week Two: He makes me lie down in green pastures; He leads me beside still waters. 

The biopsy was Wednesday Sept 18, and on Friday September 20th, I got a call from my doctor just before 2 PM. It was a beautiful day, finally a little cool out, so I was at the park with my three-year-old daughter, about to go pick up the older ones from school. You have Ductal Carnicoma in Situ, she said. Cancer. And she rushed into action, helping me schedule appointments and answering my immediate questions. Despite the early stage and non-invasive nature of this cancer, it was still cancer.

Over the next few weeks I waited a lot, met with different doctors, made decisions big and small, then waited some more…

Though the timing of this whole thing could have been better in my opinion, I was so thankful for the technology that allowed them to catch it early and I felt overwhelmingly positive, seeing the silver lining and even looking forward to some much needed rest and a break from my frenetic schedule.

Week three: He restores my soul; He leads me in paths of righteousness for His name’s sake.

There’s a book I have been working on writing for many years. It’s called Believe: A memoir and a Manifesto. It’s the story of my journey through faith. How I became a Christian, and all the ways God has restored my soul, even when I failed to follow where he led.

With this diagnosis, God has given me a strength, a patience, a sense of calm and peace, that I want to shout out from the rooftops. I will be forced to lie down and rest, and I feel confident that God will restore my soul and lead me in the way He wants me to go.

Week 4: Yea though I walk through the valley of the shadow of death, I will fear no evil; for you are with me; your rod and your staff, they comfort me.

To be honest, this isn’t the hardest valley I have walked through, and I know many of you are facing valleys that are much more heartbreaking than this one. Because of early detection and treatment, it is very unlikely that I will die from breast cancer. I most likely won’t even need chemotherapy or radiation after the surgery. David uses the words walk through because valleys have a beginning and an end. We don’t live there forever.

I decided to withdraw from my classes and take care of my health. I continued to work right up until last week, but I’m on a leave of absence now until the doctors clear me for heavy labor again. I’m at God’s mercy, not entirely sure how He will use this in my life, but knowing that He will use it.

In the valley, I make the Lord my strength. I hold onto my loved ones. And I sing. I look for the e door of hope. And more than that, I seek to become a door of hope to other people. I look for the gift in my grief.

Week 5: You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup runs over.

God is reminding me once again that he chose me. He protects me, and He calls me His own. What God wants to lavish on me is more than I have the capacity to hold. He wants to fill me with grace and peace and joy so that I overflow with love and hope.

Week 6: Surely goodness and mercy shall follow me all the days of my life; and I will dwell in the house of the Lord forever.

So tomorrow…the day after this beautiful study concludes…in God’s perfect timing, I will undergo a double mastectomy. I’d be lying if I said I wasn’t scared. And I have learned that this surgery is just the beginning of much more lengthy and complicated reconstruction process than I first realized it would be. Beyond the immediate fears are all the peripheral things. Finances, nursing school, work. The medical part is covered by insurance, but how will we pay our bills? Will my husband be able to step up and take on that responsibility completely without my contributions?

I breathe in deeply and I feel at peace, knowing that God is with us, we are His, and that my husband doesn’t need to do it on his own.

I am forgiven and I am pursued by God’s goodness and lovingkindness, and I will live in His house forever. I cannot fix or control a single piece of this situation. So, I give it all to Him to take care of. I surrender all.

This is the melody I have been humming to myself these past several weeks: Randy Thompson’s 23rd Psalm

 

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