What My Medical File Won't Tell You

Let’s talk about writing. I’ve seen my name in print before: in medical journals, emergency medicine textbooks, even on the cover of Auerbach’s Wilderness Medicine. 

Now, I write to share my story, to give hope to other breast cancer patients, to explain some of the medical nuances to non-medical folks, and for my own peace of mind. 

I’ve been journaling since I was in middle school, but since being diagnosed with breast cancer, the power of words and written thought have never been more real to me. 
My name is in print again, this time in the incredible #wildfiremagazine Body issue. This publication is for young women with breast cancer, and this issue shares what breast cancer has done to our bodies and our perceptions of ourselves. Thank you so much @wildfire_bc_magazine for giving me this opportunity to share. 
Reading others’ stories and knowing I am not alone on this journey has been incredibly helpful. Even@beewood17 read it cover to cover. The toll breast cancer takes on our bodies, our health, our functionality, and our self-esteem is overwhelming sometimes, but reading the stories of other women has been an invaluable source of support. 

Colorado Triathlon

 Less than a year out from diagnosis and finishing treatment, it is a mind shift to go from cancer patient to survivor. Nevertheless, that’s what I am. Happy #nationalcancersurvivorsday - this breast cancer survivor placed third in her age group at the #coloradotri yesterday and is crushing cancer, one day at a time.

Two Months into Menopause

Some days are hard: breast cancer is the first thing I think of when I wake up, and like an unwelcome visitor, refuses to leave. 

Other days, I wake up and do what I love, and hours pass before the visitor rears it’s ugly head. Yesterday was one of those days. 

My first ride outside on the tri bike this year, and my first 60 miler. It was heaven - fresh air, sunshine, feeling strong and fast. 

In a different universe, I’d be deep into training for Ironman Coeur d’Alene, pushing my watts, and prepping for 140.6 miles of racing. In my new universe, there’s an unwelcome visitor - but some days, it sits quietly off to the side and doesn’t make its presence felt. I love those days. 

Three months since mastectomy, two since oophorectomy. In menopause, on an aromatase inhibitor (hormone therapy) for ten years - this isn’t exactly where I thought I’d be right now, but life is full of curve balls and unanticipated challenges. 

I’m so thankful for days like these, for what my body can still do, for the reminder to cherish every single moment. Grateful for a cold Diet Coke and some salty Fritos after 60 miles. Falling in love with my #quintanarootri bike again, and grateful for the chance to race next week. Oh, and #fuckbreastcancer 

Breast Cancer Patient Takes Care of Breast Cancer patient

 A few weeks ago, I was hiking in the sunshine, loving the spring weather, and feeling great, physically and mentally. 

This week, I went back to work. I took care of a breast cancer patient, who but for her hair and eye color, could have been me. In the moment, I did what I always do as a doctor. I took care of the patient. 

But I looked in that bed and saw what could be my future in 5, 10, 15 years or less - and when I got home, it broke me. It slapped me in the face with what might be - thoughts I’ve worked so very hard to push away. 

Thoughts I’ve consciously replaced with: It won’t come back. It won’t be me. I’ll outlive my cancer’s ability to regrow, and I’ll have a normal life expectancy. 

It took weeks of mental work to focus on those positive thoughts, rather than the terrifying alternatives. And last night, it was all undone. I feel like I’m back to where I was January 27, when I heard the words “It is cancer.”

I love my job, and I am so happy to be back amongst my night crew - for the most part, it is a welcome and happy distraction for my mind. 

Not seeing myself in every breast cancer patient will remain my challenge. Not letting my mind’s recovery be derailed by what might be will require strength I’m not sure I have. Maybe it will get easier each time - or maybe it will get all the more real, and even scarier. 

8 Weeks Post Mastectomy

 Eight weeks post double mastectomy, four weeks post oophorectomy. I love a prescription for exercise! With all due respect to the natural aging process - suck it, menopause. 

This weekend’s adventures included more time outside in the saddle, and trying out some new-to-us local pools. 

I finally feel like myself again - in the pool, and in my body. Swims are getting stronger, rides faster. Yoga every day and physical therapy once a week to keep my body healthy. Goals, small and large, to focus and strengthen my mind. 

Let's Talk About Aromatase Inhibitors

Let’s talk about aromatase inhibitors (AIs). Since ridding myself of estrogen-producing ovaries, the next step is to start medication that will wipe out any remaining sources of estrogen. 

AIs are from a family of drugs that are androgen/estrogen antagonists, or hormonal oncologics. The bottle says take 1 per day “for cancer”. It should say “to prevent cancer recurrence” because with all due respect to the pharmacy, I don’t have fucking cancer anymore. 

I will, however, take this drug every day for the next 5 years that I can tolerate it. Its job is to prevent any rogue cancer cells from taking hold and growing, because it blocks the enzyme (aromatase) that converts androgen to estrogen, and without estrogen, my cancer cells can’t grow (so goes the theory). 

Some women have no side effects. Others have crippling bone and joint pain, hair loss, weight gain, night sweats, hot flashes, hyper-cholesterolemia, fractures, and osteoporosis. 

The side effects can be so bad that I enrolled in a study to track my adherence to the medication; they will provide mindfulness and other techniques to help me adhere (see the cool pill bottle with the micro USB port? It knows every time I open the bottle...). 

These side effects are to be weighed against the very terrifying possibility of my cancer coming back, should I decide not to take the drug - they would probably have to be horrific for me not to take it, but I guess we’ll see. I don’t think anything could be as bad as the fear of cancer coming back, but for some the survival benefit isn’t worth a survival of suffering. 

Tonight begins this next chapter of my breast cancer treatment, and the official start of tracking me with the pill bottle. Here’s to five years....

Recovery Through Exercise

 First swim in 2 months since mastectomy/oophorectomy! This was humbling - so much fitness and range of motion lost. So much hard work wiped out by breast cancer.

It felt like I’d never swam before, like my body didn’t know what do to in the water, and like the scars were going to rip open my chest. 

I’ll figure out my new normal and exercise tolerance in the next few months, but today was a reality check that I won’t just be hopping back into the pool or on my bike - my mind will need to be patient with my body.

Breast Self Exams - Do Them!

Today’s topic: breast self exams (BSE). I recently came across this little teaching model someone gave me in medical school: it gave me a tactile memory of what a bad lump feels like. I never forgot. 

19 years later, when I felt my own lump, it almost made me vomit - I knew the second my fingers rolled over the hard knot that it hadn’t been there before, and that it wasn’t good. Sure enough, it was breast cancer. 

There are some conflicting statistics and articles about the utility of BSE in breast cancer prevention. Most people don’t argue about the utility of mammography, but I’m an example of where routine screening utterly failed. 

I had really dense breasts, and a lobular cell tumor - a set up for missing the cancer that was likely there for years before I felt it. I religiously got a mammogram every year. It did nothing to detect my cancer earlier, or to save my life. My BSE, however, did. 

I wouldn’t say I’ve been diligent about doing BSE, but I was comfortable enough with my own breasts to recognize something new, and that’s really all you need. Get to know your breasts, examine them, feel every lump and bump. Even with dense tissue, I could still feel my lump. 

Don’t get me wrong - get your mammograms too (and colonoscopies, cholesterol screenings, and BP checks). But don’t let that be the end of your breast cancer prevention - get to know your breasts. 

I wish I could get every woman one of these models, because knowing what a tumor feels like isn’t knowledge only a doctor should have - it should be something every woman knows, so she knows when to be concerned. If you feel something, say something. 

Let's Talk about Scanxiety

 Let’s talk about “scanxiety” - the anxious fear many cancer patients have when it comes time for scans. 

Scans come in many varieties (ultrasound, CT, MRI, bone, PET) but the bottom line is they’re looking for what we all fear most: metastatic cancer. Some look for shrinking tumors in the setting of chemotherapy, others screen for the presence of disease that may or may not be symptomatic. But every cancer patient goes through the agony of scanxiety, and the life or death sentence that may come with it. 

Today is my turn: first scan since mastectomy and oophorectomy. Making sure what is most likely a benign finding on my liver from the last scan remains so, and making sure the dual traumas of surgery and stress haven’t given my cancer the opportunity to grow. 

You’re never cured of most cancers, you simply achieve a state called NED - “no evidence of disease”. It’s what every cancer patient hopes for after every scan. If there’s someone in your life who survived cancer, this is likely still a stressful anniversary no matter how remote their diagnosis. Give them a hug and send them good vibes - it helps. 

Let’s talk about Oncotype scores

The test evaluates 16 different genes in my tumor, and tells me how likely my cancer is to recur, on a scale of 0-100. It also quantifies the effect of chemotherapy on recurrence, if any. 

The test is fairly new, and applies only to hormone positive, Her2 negative breast cancers. It isn’t widely available outside of the US, and it is expensive. I’m fortunate to have this guide my therapy. 

My score is 19, putting me in the intermediate range of recurrence, with a 6% risk of distant recurrence (metastatic, stage IV cancer) in the next 9 years with endocrine therapy alone. 

The good news is chemotherapy only lowers that risk another 1.6% - not enough to justify the risks. So for now, I won’t have systemic/traditional chemotherapy - just endocrine therapy to block estrogen. It means I get to keep my hair (or at least what doesn’t fall out from menopause/estrogen blockers), and I get to keep my veins intact. 

A reassuring visit with the medical oncologist today put my mind at ease about not having chemo. It weighed on me that if I “do nothing” and my cancer comes back, I will always wonder “What if?”, and I will always have regrets. But chemo doesn’t work that way: it works on rapidly dividing cells, run amok and clinically evident - it doesn’t work on slow growing, non replicating, dormant cancer cells lurking in the depths of my body. So it wouldn’t help now, anyway. 

The countdown has started to 15 years - 180 months until I can breathe easily that my cancer is gone and not coming back. It is a long time. Maybe in a year or two, it won’t be the first thing I think of every day, or the last thing at night. With each passing day, I’m closer to a breast cancer free life. 

Let’s talk about mastectomy recovery

I opted not to have reconstruction, so came home without implants or expanders, just 2 drains. I started walking immediately, worked on range of motion right away to get my shoulders and arms moving, and started PT two weeks post op. 

Mastectomy physical therapy has been integral in my recovery- I see a PT who specializes in taking care of women like me. She works on my scars, my range of motion, and gives me exercises to do at home. It has sped up my functioning and decreased my pain - I am so thankful to be going every week. 

I’ve had to re-learn how to use my shoulders and arms to account for tight scars with less skin, how to move in space without breasts (it’s harder than you’d think after having them for 30+ years), and how to use exercise for rehabilitation instead of just plain fun. 

2 complications that can arise afterwards: cording and lymphedema. These happen if lymph nodes are removed, and even though I only had 7 taken, my left arm is clearly having issues rerouting my lymphatics so it gets swollen and firm - lymphedema. 

No one is sure exactly why it happens only sometimes, but it is not uncommon. Lots of conflicting data about having blood draws/BP checks, flying, saunas, compression - most women just deal with it. I’ve been wearing a compression sleeve that seems to help, as does manual lymphatic drainage (manually rerouting your own lymphatics to help your body figure out how to do it). It seems to be getting better. 

Cording is a different beast - thin tight bands of connective tissue or lymph tissue (again, no one really knows) that can form from the armpit to the wrist. You can literally pluck it like a guitar string, and holy hell they hurt. PT has taught me how to mobilize the tissue around the cords and to stretch them gently so they hurt less. I’m told they’ll go away eventually. I hope that is soon. 

Six weeks post op I can finally put my arms above my head without difficulty and take my shirts off without a second thought. It has taken a lot of work to get here, and I’m so grateful for all of the help. 

The Day My Ovaries Died

 Before breast cancer, Ironman Boulder 2018 was one of the biggest challenges I’d ever faced. I was so proud that I bought my first finisher jacket: it wasn’t the first Ironman I’d finished, but it was definitely the hardest, and it took me to places I’d never been, physically and mentally.

That jacket is now my talisman for each battle in the breast cancer fight. It reminds me that my mind can be fiercely strong, that I’m a fighter, and that I never, ever give up. So I wore it today, along with my F*ck Cancer socks from @chelseadymond - and I’m home recovering. 

Pictured, for the curious, in the next photo is one of my actual ovaries - the little beige lump. Doc said everything looked normal and healthy - just another sacrifice on the altar of breast cancer. They’ll send it for pathology just to be sure.

Now 2 long weeks of patience and more activity restrictions, just as I was finally getting some semblance of my life back. I’ll be walking today, and counting down the days until I can bike and swim again. 

Thank you all so much for the support and good vibes - I felt you with me today in spirit. I am so grateful for my love @beewood17 who takes care of my body, mind, and soul. Today I am thankful and ready for what lies ahead. 

Let's Talk About Menopause

 

Let’s talk about menopause. No one really does, in medical school, in life, in social circles. I vividly recall being educated during late childhood on my impending puberty, my fertility, and the changes I would go through. 

But no one really talks about menopause. It is the process through which our bodies stop having the ability to bear children, and stop making the hormones that allow it to happen. Women are thought to begin the process somewhere in their 40’s, and it might last for 5 to 10 years before the ovaries completely shut down. 

Some women weather the change gracefully, barely noticing. Others suffer myriad changes that affect daily life (sweating to the point of needing to change clothes is hard to manage with a day job), that affect sexuality (so many losses here, too many to count), that affect health (cardiovascular disease and osteoporosis increase in post menopausal women). 

Well, by this time tomorrow, I’ll be in menopause. I’m 45. I’ll never know what natural menopause would have been like, if I’d have had a graceful transition from childbearing to later stages of life, but for me there will be no such grace - it ends tomorrow. 

And that’s the point - the end of my ovaries means the end of hormones that can fuel my cancer, and that’s why I’ll get them removed tomorrow. 

Technically known as a laparoscopic bilateral salpingoophorectomy - they’ll remove the tubes and the ovaries through tiny incisions in my belly button and lower abdomen. I will be home recovering tomorrow afternoon - and have no idea how soon after the symptoms of menopause will begin. 

Thank you to @beewood17 and my beautiful daughter for another organ-inspired cake to commemorate the loss of yet another one of my organs. It feels like a lot more this time, because of what comes afterwards, but it is a small price to pay for years of disease free survival and life. 

My First 5K After Cancer

5 weeks ago, I had a double mastectomy. Today, I ran 5k. I’m not sure this smile captures the sheer joy I feel moving, or the first time I’ve felt like myself inside this body in five weeks. 

Today I had no distance or time goals, no expectations, and no idea what I could do, if anything. Today I felt the sun, took deep breaths, and ran. Today, I feel like I can crush cancer. 

Let's Talk About Exercise

I’ve known for a long time that the human body, or at least this one, needs a certain amount of movement to function, and even more to thrive. 

Studies have shown a link between high BMI and mortality/disease free survival from breast cancer. Adipose tissue is a source of estrogen, so it makes biological sense that if you have an estrogen-sensitive tumor and lots of tissue making estrogen, it’s not great for recurrence risk. 

I was diagnosed with breast cancer while training for my 5th Ironman. I was logging 12000+ meters of swimming and hours of biking each week - and I have breast cancer. I chose to see the power of exercise as what kept my cancer from spreading wildly, and the reason it wasn’t more aggressive. 

I got up and walked the day after my double mastectomy, and every day since. I went into it with a month of core and upper body strength work to recover faster. Yesterday, I did a plank for the first time in a month - and almost cried it felt so good. 

Some of the most badass breast cancer warriors I know are runners, triathletes, hikers, and yoga instructors. I believe the physical and mental strength of challenging yourself to be faster, go longer, or stretch farther is what makes them survivors. 

When I asked my oncologist what, if anything, I could do to prevent my cancer from coming back (besides hormone therapy), she said unequivocally “Exercise. Minimum 3 hours a week.” No problem, doc. 

I’ve come to terms with the fact that my body won’t be the same after menopause, on meds, and that it won’t be ready for the St. George 70.3 or Ironman Coeur d’Alene. I’m OK with giving myself time to heal, but exercise is definitely going to be part of that healing. 

I hope to be at the starting line of more than one local triathlon this year, and to see some friends at IM Boulder 70.3 in August. I am learning patience, respect for my body, and renewed appreciation for the benefits of exercise. 

Let's Talk About Estrogen

Breast cancer comes in a few flavors - there’s the cell type it comes from (85% from the ducts or 15% from the lobules). It can have lots of receptors for hormones such as estrogen and Her2, or be receptor negative. The type of cells and their receptors are what guide treatment and whether or not hormonal therapy is warranted (this is different than chemo therapy).

My cancer cells were 100% estrogen and 99% progesterone positive - meaning they are highly sensitive to these hormones, like watering a plant. I’m Her2 receptor negative. 

So though the actual tumor was removed, I’ll spend the rest of my life trying to prevent any rogue cancer cells that snuck away from lodging elsewhere in my body and coming back as stage 4 metastatic breast cancer. I can’t water the plants anymore, so any sources of estrogen and progesterone have to stop. 

If I was younger or wanted more kids, my choice would be to block estrogen receptors on my cells (tamoxifen) and to shut down production in my ovaries (lupron). Instead of taking 2 drugs to preserve ovaries I don’t need, I’ve opted to have them removed instead. 

April 9th the hormone factory ovaries will go, and I’ll be in instant menopause at age 45. No more estrogen means lots more hot flashes, night sweats, mood swings, decreased libido, and vaginal dryness. Sounds fun. It also means increased risk of osteoporosis and cardiovascular disease - and a much lower risk of breast cancer recurrence. 

Another surgery, another part of my womanhood gone, and another sacrifice in the name of disease free survival. 

Post-Op Mastectomy Day 15

 Post-op day 15: surgical follow up. Fortunately, one of my drains was pulled! (Pictured, for the curious - the entire white part was in my chest.) 

Unfortunately, I already have some cording and lymphedema on that side, so it’s time to start stretching and PT. The right side drain is still in, because it’s still draining. 

I can (and should) start doing “breast” exams (technically scar exams) in 8 weeks, but I’ll never need another mammogram or breast MRI. Clinical surveillance and annual visits to the surgeon are all I need as far as the mastectomy goes. 

I left the CU Breast center feeling more hopeful and optimistic than I’ve been in weeks - my surgeon gave me the green light to get back to training, and if I don’t have pain, to race Ironman Coeur d’Alene in June. If it happens, I plan to be at the starting line. Just the thought of it changed my whole mindset. Hope is a powerful force. 

Next in the cancer fight: ovary removal on April 9th. PT and lymphatic drainage. Putting my arms above my head, and washing my own hair. Enjoying the feeling of hope - it has been a minute since I had that feeling. 

Wilderness medicine, knots, and cancer

 When wilderness medicine and surgical oncology meet - drains, knots, and carabiners. Normally knots and carabiners make me think fondly of climbing ice, rock, and mountains. Now they tether my drains to my lanyard so I can shower. 

Post-op day eleven and my drains remain, still putting out too much fluid to remove. The scars are otherwise healing well, and I’m up to almost two hours a day of walking. 

The next step on this journey is more surgery: I can’t have an estrogen-producing organ and an estrogen-receptor positive cancer, so to lower the chances of this cancer coming back, I have to get rid of my ovaries. 

I could get rid of them chemically, suppressing their function with drugs that would induce menopause, along with a bunch of other side effects, or I could get rid of them surgically. I choose the latter. Apparently this reduces my risk of recurrence further than drugs would, and my oncologist seemed relieved at the ease with which I was willing to part with more of my body parts. 

So in a span of less than four months I’ll have lost 2 breasts, 2 ovaries, my fertility and my hormones, and be put into immediate menopause. What I have gained is hopefully years of disease free survival, a cancer free body, and a whole new perspective on what it means to be a woman, and to be alive. 

Four Years Ago Today

March 5, 2017 - four short years ago, we took this photo in Cozumel, on our first dive trip and a rare non-racing vacation. I don’t think I’ve ever laughed so hard or had so much fun.

March 5, 2021 - post op day four from a bilateral mastectomy. Life sometimes changes in an instant, sometimes more slowly, but nothing is a guarantee and no one should be taken for granted. Now more than ever, I know each day is a gift. 

Today’s gift came in the form a phone call from my surgeon - my pathology results are reassuring and my lymph nodes have no signs of cancer, which means I dodged the radiation bullet for now. Ted the 3.4 cm tumor is gone, with clean margins and no signs of spread. My right breast was a healthy sacrifice in my fight against breast cancer. 

Before they put me under on Monday, anesthesia told me to visualize a happy place, and I went to Cozumel in my mind. @beewood17 I hope we can go back for real soon. For today, I can breathe a little easier knowing there’s no radiation in my immediate future. 

Post-Op Day 3

 We scored a free treadmill that has been a lifesaver for getting me moving. Walking feels like heaven.

Plastic drains tunneling under your skin and sucking out fluid feel less heavenly. They have to stay in until the output drops below 20cc in 24 hours x 2. These things are damn painful. My left arm, where 4 lymph nodes were removed, feels swollen, tight, and like a small evil elf is stabbing me in the armpit. Other than that, the pain has been minimal.

I flat out cried when I took off the bandages and saw the Frankenstein-esque remains of my body. I am grateful the tumor is gone; I am sad about the carved up remains of my self. Every time I look, it gets a little easier. 

Next up: awaiting the pathology of my lymph nodes that will determine whether I need radiation. Awaiting further testing of the sample for an oncotype score that will determine whether I need chemotherapy. Hoping the drains can come out next week. Trying to keep up with walking, healthy food, hydration, and gentle stretching. Working hard to slow down my body and my brain, neither of which likes to be slow.