The Big Fuss About Hair

Let me start by saying this: It’s taken me most of my life to get good at doing my own hair. The irony that my hair is now mostly gone and what remains is rapidly falling out like a rainstorm, is not lost on me.

When I was diagnosed with cancer, I lived in the false illusion that I would be able to “save my hair”. I held tightly onto that belief until my oncologist determined my protocol and a quick Google search confirmed my worst fear: my chemotherapy medications cause total hair loss. As I grappled with that loss, I quickly bought trendy headwear and a menagerie of wigs, determined to not look like a cancer patient.

Two weeks to-the-day from my first treatment my hair started falling out in clumps. The clumps piled up in the shower drain and the bathroom sink the morning of my second chemotherapy, and as I set down my bag to step on the scale at the doctor’s a clump of my hair came with it. The next day, I shaved it off live on Facebook (as many of you watched).

In the moment, I was determined to take control of something that felt out of control. I was ready to embrace the cute hats and the variety of wigs. I was headstrong and determined to not let this part of my cancer journey rattle me. It didn’t – for approximately 18 hours.

The next morning, as I walked into our bathroom, I caught my bald-headed reflection in the mirror for the first time – and my heart sank. The outpouring of support from my head-shaving left me feeling brave and confident in my decision from the day before, but now reality was setting in. My head is a great shape, yes, but I’m still bald and now I officially look like a cancer patient. There’s no hiding it anymore.

That same day, I had back-to-back video meetings with clients and virtual speaking engagement that afternoon. I grappled with what to do about my hair. Do I go bald? Wear a hat? Put on a wig? If I don’t wear a wig, will they know I have cancer? Will that make them uncomfortable? Do I care? Do I want to have a conversation about my cancer with these people? Do I want to see another human give me the side-tilt pity face that everyone inevitably makes when you tell them “I have cancer”? If I wear a wig, will they be able to tell?

I weighed those questions until the final moments before my meeting when I inevitably slid on a wig and pretended everything was okay. Thirty minutes into the meeting I was in agony. I was having a full blown chemo hot flash and dying in the wig. As I jumped off for a different video call, I quickly told the client I had cancer, that I was wearing a wig, and promptly took it off in front of him on video. The release was like taking off a pair of jeans that were just a little too tight after wearing them a little too long. I was too distracted by my own relief to notice if he was horrified, confused, or impressed. I’m not sure I cared.

That was a week ago and honestly, I’m still struggling with the bald head-hat-wig decision. I mostly wear a hat these days because my remaining stubble is falling out rapidly and needs to be contained – otherwise my desk looks like someone shaved their beard on it. Aside from the hair loss, my scalp is so tender the idea of sliding on a wig makes me want to vomit. Nonetheless, every morning I grapple with the decision of what to do about my head, not because of how I feel about it, but because of how other people will.

When I was first diagnosed my husband looked at me and said, “How can I support you on this journey?” I remember looking at him plainly and saying, “Don’t treat me like a cancer patient.” I chuckle at that sentiment now, but in the moment I know why I said it. I feel it every morning now as I walk my daughter to school. I see the parents in their cars pulling away after dropping their kids off, looking at me, like a cancer patient. I see the pity-filled looks at the grocery store, the post office, and the bank.

But it’s not the pity. It’s not the sad side-tilted face people make when you tell them you have cancer. It’s not even my hair.

It’s because I don’t want it to be true. I don’t want to have cancer. I don’t want to be sick. The hair loss has just made cancer real on the outside, as much as on the inside. Up to this point, I could hide my cancer. Now I can’t. So in total truth-telling, know that I am struggling with my hair loss, but mostly because I’m finally being forced to face the fact that my cancer is real, that this is hard, and that I am not, in fact, Superwoman (although I will continue trying to be).

It was never about not feeling pretty or feminine (dammit I have a nice head and I look GOOD in a hat). It was never about what people thought about my bald head/hat/wig. It was never about them. It’s 100% about having to face the hard truth that my cancer is real – and honestly – I still find myself occasionally in disbelief.

Nonetheless, here I am, a cancer patient.

I am so grateful for the outpouring of love and support. The cards, the notes, the comments, the gifts, the meals from my large tribe of friends and family have been so meaningful to me. Thank you all. I’m still finding joy along the journey, having faith that this wilderness is for a reason, and will turn these trials in to triumph and wisdom for the people after me.

XOXO.

Science!

Many of you have been asking the science-y questions about my cancer. Well, buckle up, but here is a science lesson you may not have know you ever wanted.

There are several types of breast cancer. The most common type of breast cancer is called Ductal Carcinoma In Situ (DCIS). In short, it means that the cancer cells are contained in a breast milk duct inside a woman’s breast. That’s a good thing – it means it hasn’t spread anywhere and is mostly self-contained inside the duct. This type of cancer is typically treated with a mastectomy and some hormone therapy (more to come on that in a minute). I have a spot of Ductal Carcinoma In Situ in the center of my right breast in a duct directly behind my nipple. DCIS is rated in three levels 1-3. 1 being new cell formation, not rapidly duplicating. Level 3 means its duplicating rapidly and on the verge of becoming Invasive or rather spreading outside the duct (bad). My DCIS is Level 3. DCIS no matter what level is considered stage 0 cancer.

My lump is in the outer lower quadrant of my right breast about 3-4 inches away from my cells behind my nipple. It is a type of breast cancer called Invasive Ductal Carcinoma (IDC), meaning it has spread outside of the duct and into the surrounding breast tissue (and in lots of cases to lymph nodes and other tissue beyond the breast). My IDC is stage 1B which means that I have both a mass measuring no more than 2mm and other small groupings of cancerous cells (behind my nipple), but that it hasn’t (thankfully) spread to lymph nodes or through my surrounding chest wall. Stage 2 would mean that it has spread to the first layer of lymph nodes beyond the breast tissue.

Breast cancer cells are also evaluated for hormone receptors: estrogen, progesterone, and a human growth protein called HER2. Every cancer starts out with both positive and negative receptors and as it grows the positive or negative receptor cells take over. Breast cancer cells that are positive for estrogen/progesterone/HER2 grow in the presence of those hormones and are often treated post chemotherapy with hormone therapy to prevent future growth. Negative cells are more difficult to treat because they grow in spite of hormones. Thats about as good as I can explain this stuff – needless to say it’s complicated, but makes treatment of breast cancer much more specified, and thankfully effective. My case, of course, is a unique one.

My DCIS (milk duct contained) is 29% positive for estrogen receptors, 26% positive for progesterone receptors, and negative for HER2. Those are particularly low levels for a hormone positive cancer and curious on their own, but my lump adds an additional curiosity. My lump is 9% positive for estrogen receptors, negative for progesterone, and negative for HER2. Its super uncommon to have two different types of primary cancer.

This is what my oncologist called “a shit pathology report”.

After my oncologist consulted with a friend a Dana Farber Cancer Hospital they concluded that we caught the pathology of my breast cancer so early that the negative cancer cells were in the process of taking over the positive receptor cells. They have effectively rated my breast cancer “triple negative” or negative for estrogen, progesterone, and HER2 receptors. This type of breast cancer is the most aggressive, fastest growing, and most likely to recur within a 5-year window. However I am SO LUCKY that we caught it early. The five-year recurrence rate for triple negative breast cancer for stage 1 is under 10%.

So, here we are. My oncologist, in consult with my breast surgeon, made the decision that we would start with chemo instead of the mastectomy. My case was right on the borderline of the protocol and they opted to attempt to stop the cancer growth and prevent spreading prior to surgery. I will require a full mastectomy (removal of the whole breast) because the two cancer spots are too far apart to effectively preserve my breast. I have opted for a double (or bilateral) mastectomy because of the cancer being triple-negative and attempting to avoid any recurrence (hang tight for the blog where I tell you all about talking to my plastic surgeon about reconstruction…full of laughs).

I have eight chemotherapy treatments (spaced every two weeks). The first four are Adriamycin and Cytoxan together. The adriamycin is called the “red devil” because it’s red in color, makes you pee red, and has some nasty side-effects. It’s the strongest chemotherapy there is – and it causes total hair loss, usually a few days after the second treatment (my second treatment is slated for April 5th). I’ll be rocking some sweet headgear…look out…but if anyone has suggestions for my eyebrows let me know (fake mustaches perhaps?). My second four treatments will be Taxol, which is allegedly easier, but can cause permanent neuropathy – and also total hair loss. Hopeful you all like the look of my bald head for awhile.

My chemotherapy treatments will take me through June, then I will recuperate for 4-6 weeks prior to my mastectomy, slated for sometime in August. If the pathology from my mastectomy comes back with “complete pathological remission” meaning zero cancer cells in the breast tissue, my treatment will be complete. If however, there is any trace of cancer still growing, I will require additional treatment.

There’s your science lesson for today. I probably screwed some things up – I’m not an oncologist and to be honest cancer and cancer treatment is so complex, it’s hard to keep it all straight. Until the next episode!

XOXO.

28 Days Ago.

Twenty-eight days ago, I walked into the breast diagnostic center of the hospital for what I thought would be a mammogram, an ultrasound, and then draining what my OBGYN and I both believed to be a cyst in the outer-lower quadrant of my right breast. I remember calling a friend on my way to the hospital and mostly being nervous about how bad the mammogram would hurt, but cancer wasn’t even a possibility in my mind. I’m young. I’m healthy. Cancer? Not me.

It was 28 days ago, when the radiology technician asked to take “a few more shots” of my right breast, after a long wait while the radiologist reviewed my mammogram and then escorted me to a new room for an ultrasound of my right breast. It was then that the radiologist showed me the lump and said, “It’s not a cyst. A cyst would be solid black on the ultrasound and have clearly defined edges. Do you see how your edges look furry?” He then shared that there was a second spot that appeared on the mammogram, “some calcifications”, that were not in the vicinity of the lump. Under normal circumstances those spots would be benign, but in the presence of a lump – they become concerning.

We will need to biopsy both spots. Can you stay longer so we can do that now?” Those two sentences set off my alarm bells. There was a sense of urgency without much explanation and I knew that wasn’t a good sign.

Twenty-eighty days ago I had two biopsies with nothing but localized numbing, on two different machines, in two different rooms from two different spots of my right breast. As I sat up following the second biopsy, the doctor looked me in the eye and said, “Look I’m going to be really honest with you. I’ll be really surprised if this doesn’t come back as cancer.” She put a rush on the pathology and 24 hours later she called – to tell me what heart already knew. Both spots came back as cancer.

Twenty-seven days ago, I was diagnosed with breast cancer.

In the past 27 days, I’ve seen a breast surgeon, a plastic surgeon, my OBGYN, my PCP, an oncologist, and a genetic counselor. I’ve had an MRI, EKG, echocardiogram, two chest X-rays, bloodwork, a genetic test, a COVID-19 test, and a surgery to place my port. I attended a 2-hour “chemo class” where they walked me through the drugs, the side effects, and all the things nobody talks about when it comes to cancer. I have six new prescriptions that line my bathroom sink and more paperwork than a human can fathom.

I blinked and a month of my life has passed me by. Perhaps I should be glad it’s passed quickly and hopeful the treatment passes just as fast. But I want to be present. I want to remember. I don’t want to look back consistently on my life and have this year be “the year I had cancer” and recall nothing except that it happened. I want to remember it all – the pain and the joy. The grief and the laughter. I hope you’ll all join me as I try to remember it all.

I start my chemotherapy today – and to be honest, I’m anxious. My port is tremendously sore from having it placed Friday and I know that accessing it today won’t feel incredible. Mostly, I’m afraid of the all the unknowns: How will I feel? How will the port feel? How will the medicine make me feel? Down the rabbit hole I go!

More than anything, this Level 5 Type A Control Freak is learning that I can’t control everything and that I need to let go, give it to God, trust the journey, and find the joy along the way.

Feel free to put a little joy into the universe for me today. Till next time.

Four Things to Do With Your Gal Pals This Galentine’s Day – Even in a Pandemic.

Friendship is a form of self-care. It combats loneliness, spurs laughter and joy, helps us process complex emotions, and allows us to be truly ourselves. In the middle of a pandemic, where most of us feel alone, sad, anxious, stressed, or bored (among lots of other emotions) on a regular basis – we need friendship more than ever.

Yet, new research is suggesting that the pandemic is changing our social networks and friendships. People are shrinking their social circles and have less day-to-day interaction with their friends, than ever before. While that alone is troubling, studies also suggest that women are bearing the brunt of the caregiving responsibilities during the pandemic. The CDC reports that two out of every three caregivers are women. They also indicate that women who are caregivers, “have a greater risk for poor physical and mental health, including depression and anxiety.” #awesome.

Ladies we need friendship time, now, more than ever. Thank goodness it’s almost Galentine’s Day. Galentine’s Day, a holiday created by Amy Poehler’s character, Leslie Knope on Parks & Recreation, is a day intended to celebrate and spend time with your gal pals. It’s only the best day of the year!


Galentine’s Day, a holiday created by Amy Poehler’s character, Leslie Knope on Parks & Recreation, is a day intended to celebrate and spend time with your gal pals.


I know what you’re thinking…

I wish I could hang with my gal pals this Galentine’s Day. That sounds awesome…but…pandemic.

or

If I have to sit on one more Zoom Happy Hour and listen to 20 people talk over each other for an hour, I’ll scream.

I feel both of those statements on a personal level and I know many of you do, too. I’d like to offer some remedies:

Four Ways to Hang with Your Gal Pals This Galentine’s Day without a Zoom.

  1. “Essential Dates”. My first essential date happened almost by accident. I was texting with one of my best girl friends. We were discussing how much we missed each other. I mentioned a need to go to Target for a few essential things and she mentioned she had something to return. I suggested we perhaps go to Target at the exact same time. We met up, after the kids were in bed. Target was empty at 8:30 p.m. on a weeknight. We wore our masks, had separate carts, and casually browsed every inch of that Target for almost 2 hours. It was pure heaven. Many of us are going to the grocery store or running a few essential errands on a daily basis; Why not ask if a gal pal wants to meet you there? Who said grocery shopping can’t be fun? I already have plans for a Galentine’s Day Essential Date to Target with my best gal pal. Maybe that’s lame, but it was something I needed more than I even knew.
  2. Face-to-FaceTime. I spend a LOT of time sitting in my car. Waiting in drive-thrus, school pick-ups, while my daugther is at her socially distant dance class, picking up carry out, etc. I use that time to FaceTime a friend or family member to catch up – even if for only 10 minutes. Friendship isn’t built through Zoom parties or even small group conversations. Friendship is built through one-on-one meaningful conversation. It’s built through intentional questions and radical listening. Try using some of your car time to check in with a lady friend or schedule time to get face-to-FaceTime, instead of mindlessly scrolling through the Netflix menu at night. You won’t regret that time connecting with a friend, unless you haven’t seen Bridgerton yet.
  3. Garage Party! Some of you are lucky enough to not live in the frozen tundra that is the upper half of the US right now, #jealous. Try a small gathering of close lady friends on a patio or garage. A friend and I did this a couple months ago. She and I sat apart from each other in the garage one morning, sipped coffee, and caught up. For those of you lucky enough to still be outside right now in quazi-tolerable temperatures, there’s lots of ways to connect with your lady pals outside (but please, make sure to still mask up and keep it under five people)! Try something that gets your heart pumping or your legs moving – after all the CDC did say we’re at risk for poor physical health…
  4. Parking Lot Drive-Ups. It’s cold here in Indiana. Leaving the confines of my car when its 18 degrees and snowing is not my idea of a good time, no matter who I’m talking to. Recently, a gal pal and I met in parking lot and pulled up window to window (still 6 feet apart and masked). We rolled our windows down and chatted with each other for over an hour – in the comfort of our warm vehicles. We chose a parking lot that wasn’t full at that particular time of day and sat way in the back away from any other cars. It was great to physically see each other and warm my tooshy at the same time.

You might have caught on by now, but there are lots of ways for us to see our lady pals and still socially distance. I recommend ACTUALLY taking the time to be one-on-one with your friends. Those interactions are far more powerful than group happy hours, zoom parties, and large gatherings. The conversations are more focused, meaningful, and revitalizing. While I enjoy a good group text filled with memes that feel all-too-relatable, spending time in meaningful conversation with each other fills my bucket WAY more.

So, make time for your lady pals this Galentine’s Day. You might not realize how much you actually need it.

So, You Wanna Be an Ally for Women?

Here’s the thing, allyship is hard and it’s messy. It requires one to risk the consequences of standing up for women in patriarchal environments. It’s not as simple as just “building relationships” with more women or publicly promoting their work.  The truth is, creating systemic and cultural change within any organization is hard – and it takes a long time.

If you’re just now casually dipping your toe in the “ally waters”, you might start with building more relationships with women at work, attending events hosted by women’s organizations, or even promoting the work of women or women-owned businesses.  That’s a start.

If you want to wade on down to the deep end of the pool, we welcome you.  That work is a little more challenging and requires a lot more risk.  If you want to be an ally, here’s where you might go next:

  • Intentionally seek out women to listen and hear their stories of harassment, bias, and mistreatment in the workplace – and believe them.  It’s common for men to be totally oblivious to the injustices women – and particularly BIPOC women – face in the workplace.  We often hear male leaders say, “we don’t have a problem with harassment or bias. We have no reports of it.”  The truth is the data tells a different story.  It’s happening; it’s just going unreported by most women (because of fear of retaliation).  A great step would be to start trying to understand the experiences of women at work – and believing them when they tell you.
  • In meetings that you have control over, ensure that female (and historically marginalized) voices are equitably represented and are given equal voice. It’s easy to just call a meeting and invite the usual suspects. Allyship asks us to challenge the status quo and take hard look at the people in the room. What voices are missing? We know that diverse teams are more creative and more successful. If you’re calling the meeting – you get to decide how diverse the room is.
  • In meetings where you are a participant, pay attention to the women in the room. Are they sharing? Are they being interrupted? Are their ideas given equal weight and consideration? If not, use your privilege to ensure those voices are heard, their ideas are considered, and credit is given.
  • In hiring practices, don’t settle for a pool of male candidates because your hiring managers said, “this was the best talent available”. Require diverse candidates and more than one woman in the hiring pool. A recent study discovered that when there is only one woman in the hiring pool, there is statistically no chance she will be hired.  But when the pool increases to two women, she has a 50/50 shot.  Push your recruiters to look harder for talented women and demand more diverse hiring pools.
  • Ask women you supervise, what their career goals are, what roadblocks or hurdles they’re currently facing, and then use your privilege to help remove them.  Studies show that too few women are being sponsored by male supervisors and leaders, and as a result aren’t getting high stakes assignments and promotions that are critical to advancement into senior leadership roles.
  • Connect women to powerful men in your organization and network through personal introductions, not just casual ones.
  • Every time you have a negative reaction to something a woman says or how she says it, asking yourself, “would I be reacting this way if it was a man?” Confronting our own personal bias is critical to allyship. If you’re not sure if bias is at play, take the time to build a relationship with that woman or talk through your interaction with her to raise your own awareness.

Allyship shows up in places where no one is watching, when there’s no women present, when there’s no other allies in the room. Allyship speaks up and shuts down the comments, the bias, and asks why there are not women in the room when decisions are being made.

Allyship makes space for women at tables they’re not at. It ensures women are in the room. It uses personal privilege to make space for more female voices. It doesn’t settle for the status quo and it demands greater diversity, greater equality (and equity) in every room they are privileged enough to sit in.

This is allyship.

Allyship is not exclusive to men and in fact, women need just as many female allies, as male ones.  Cultural and systemic change requires constant and persistent effort by lots of individuals to truly make the shift. So whether you’re new to ally conversation or in the deep end of the pool, we welcome you to the work of allyship.