3 year cancerversary

 3 years ago today I got the call no one wants; I heard the words “it IS cancer.” Nothing has been the same in my world since.

Grateful to spend this 3 year cancerversary with my favorite humans in a cool place @marconimuseum raising money for @runway4recovery - we got fancy, we walked the runway, we cried, and we heard moving stories. (My runway dress courtesy of @poshsocietyhb ).

It was a small way to honor and support the 800 women who heard the C word today for the first time (800 women are diagnosed every day in the US w #breastcancer ). Thank you @beewood17 for walking by my side, and to everyone who watched from home and supported this incredible organization that makes direct financial grants to breast cancer patients.

#cancerversary #3years #fuckcancer#fuckbreastcancer #breastcancer#raisingmoneyforpatients#thisisbreastcancer#flatandfabulous#flattie

Trying to stand tall - not succeeding

 

Another October, another breast cancer awareness month. My third since diagnosis. It is tough to weather the onslaught of pink, ribbons, walks, and "awareness" - I am aware of breast cancer every single moment of my damn life. I would like to be blissfully unaware of it - but that is not an option anymore. 

This October I decided to become an ambassador for Stand Tall Aesthetic Flat Closure, and last Sunday I led a team of brave flatties at the Making Strides Against Breast Cancer walk in Denver. To be clear, we are not making strides against breast cancer. 1 in 8 women in the US will be diagnosed in her lifetime, and of those, 1 in THREE will go on to develop metastatic breast cancer and die from it. 1 in 3. That's where I live now....wondering if I will be the one. This hasn't changed appreciably in the 20 years since I graduated medical school - we are living longer after earlier diagnosis, and yes the 5 year survival looks great compared to some other cancers. But when you're diagnosed in your 20's, 30's or 40's with cancer, just five more years doesn't seem like a lot. And even though many of us will live those 5 years, many of us will still die decades later from breast cancer (see Suzanne Somers, obituary). 

Sobering, stressful, scary - these numbers are hard to ignore, and hard to escape. But in the meantime, I can at least advocate for body positivity after surgery, to avoid the pressure to get reconstruction, and to show other early stage patients that remaining flat is a beautiful choice. I don't begrudge anyone their implants, flaps, expanders, or multiple surgeries - but that was never going to be the plan for me. 

2 years later I have zero regrets about going flat. About removing a healthy breast for symmetry. About not "saving extra skin" for reconstruction later. I love not thinking about wearing a bra...ever. I am so grateful I had no complications, and I didn't have to put my body through the stress of multiple surgeries. But I got push back from my surgical team, also known as "flat denial", and multiple people tried to convince me I'd regret my choice. I do not. 

A woman spotted our signs and our group Sunday, and she made her Mom come say hi. Her mom had been flat for years, and never once felt proud or confident in her body. She saw us, and she cried. We had flattie hugs. Several other women saw us, and nodded or fist bumped or cried out "You're so brave."

I wish it didn't require "bravery" to be comfortable in your own skin. I wish these women felt whole, confident, and beautiful with their scars. I feel so grateful to show them they can. Thank you to all of the brave flatties who shared their photos with me before surgery so I could feel confident in my choice, and to all the women who walk topless and scarred and proud. I'm proud to call myself a flattie. 

UPDATE: I have subsequently been shamed for taking off my shirt in public, and  made to feel badly for doing something I "wouldn't have done when I had breasts". I am taking a break from the flat community for a while, and from social media too. I am heartbroken that this is leading to divisiveness and shaming within the breast cancer community. So sad. 

ILC Bootcamp at CU Cancer Center

On Saturday, just in time for the 2023 ILC Symposium, we were honored to attend the ILC Bootcamp at the CU Cancer Center. This event was made possible by a grant from the Breast Cancer Care and Research Fund, as well as the CU Cancer Center and the Sikora Lab. We are fortunate to have a local research lab dedicated to ILC - this is a really unique opportunity for local advocates to learn about ILC and to be involved on a personal level with the studies that might someday cure our disease. 

We covered a lot today. We learned about the research life cycle, and how ideas become experiments that become published papers (it takes an average of four years!). We learned how to read research posters at conferences, and gave feedback to scientists on what advocates and patients want to see. We had a basic primer in cancer biology (all of a semester crammed into 1 session...), and connected researchers to advocates. Most importantly, we made some new friends, welcomed some new patients into our local network, and I got to hug a flattie in person (thank you Judy!). 

Some days it's hard to think about breast cancer. Gearing up for October and the pinkness of Breast Cancer Awareness Month especially makes me want to run and hide for 4 weeks. But I realize how absolutely unique and amazing it is to have an ILC research lab in my backyard, and a dedicated researcher who wants to cure my disease (thank you Dr. Sikora). Today was a day I thought about nothing BUT breast cancer, and it was a great day. 

Be an advocate. Meet a scientist. Work with researchers to help guide them on what matters most as a patient. It feels good. 

Riding the Triple Bypass & Peer to Peer Fundraising

 

 I needed some motivation and "why" to ride 118 miles and climb 30k feet in elevation in one day. Raising money for the Lobular Breast Cancer Alliance was it. I couldn't let down the family and friends who donated on my behalf to the ONLY organization in the US dedicated to my weirdo 15% breast cancer subtype (15% of all breast cancers isn't that small a number, but you wouldn't know it based on the research and publications in this specialized area). Thank you to everyone who supported our ride, thank you as always to my husband and partner in all crimes Brian, and thank you to my body for showing up and getting it done on July 22.

2 years of poison....starting, NOW.

 

Next stop on the Cancerland Railroad...abemaciclib! 

Tomorrow I will start 2 years of this incredibly expensive, less-toxic-than-regular-chemo drug called a CDK4/6 inhibitor (cyclin-dependent kinase 4 and 6, for those that speak cell biology). Some recent trials have demonstrated a significant disease-free survival interval for early hormone + breast cancer patients taking this along with antiestrogen therapy. 

Disease free. 

No evidence of Disease. 

The absolute best and happiest state you can hope for as an early cancer patient. 1 in 8 women in the US will develop breast cancer. Of those that do, 20-30% will progress to metastatic cancer - with chemo, surgery, radiation, ten years of meds. With doing all the things they told you would 'kill' your cancer. Your cancer will still kill you. 

Who is in that 20-30%? How can you prevent yourself from being there? Well unfortunately we don't know, and you can't. You can live your best life, increase your chances of survival with things like meds and exercise and not drinking, but at the end of the day, biology is a random bitch and I might end up there. 

Enter abemaciclib. 

The idea is that this might prevent a recurrence by blocking cell replication in any lurking cancer cells. So that they don't turn into metastatic cancer. So I don't die of breast cancer. This is a newer class of drug, and a more targeted therapy than traditional chemo, and I appreciate the trials and researchers that brought it to patients. 

Exciting side effects to anticipate: nausea. diarrhea. profound fatigue. low white blood cell counts and easier infections. hair loss. anemia. Horror stories of needing adult diapers and imodium to prevent diarrhea explosions in public. This should be interesting in 3 weeks when I'm supposed to race a half-ironman...

But I know this increases the chances if me staying in the 70-80% of women who outlive breast cancer, so it's a worthy sacrifice now for longer life later. I appreciate the hell I've put my body through to survive, and I hope it can manage this next phase without too much more collateral damage. 

2 years starting now....

If you knew death was coming...would you live differently?

Time is certainly a thing not to be taken for granted. Somehow most of us go about our lives working, saving for, planning for later. What we'll do when we are old enough but still young enough, when we have enough time, enough money, enough of whatever we think is the key to getting where we want to go. Somewhere inside we know that we shouldn't be sacrificing our time now for the promise of time later, but we justify it in a lot of ways.  

When you have cancer, you definitely do not take time for granted. The frustrating thing is that time is both shortened, and lengthened. Joy and appreciation for little moments abound, but it becomes overwhelming to plan for a future that might not exist. If you could know with 80-90% certainty that your cancer was going to come back, not a matter of if but when...

Would you want to know? 

In a few weeks, I will know. 

Finally FDA approved and sent by my oncologist, my tumor sample and a blood sample were sent off to create a profile of my cancer DNA, and to look for it circulating around. 

If it's NOT there, that is a huge sigh of relief and it means we haven't found any rogue tumor cells or missed any tumors lurking about...for now. Since they have my tumor DNA, we can retest for it in the future to know if things have changed. 

If it IS there, now or later, it's an early warning. But it means there's an 80-90% chance I will develop "clinically relevant" metastatic breast cancer within the next 9-12 months. 

It means I'll be in this weird state where we know the cancer is coming back, but we don't yet know where. It will mean a ridiculous amount of scans to look for spread. It will mean that I will die of metastatic breast cancer someday. 

Not today. Not tomorrow. But someday in the not-too-distant future. Short of the freak accident, car wreck, lightning strike etc, it will be breast cancer that kills me. 

And it will mean an even bigger change in life plans than the recent past has already given me. If I knew my death was coming, I sure would live differently today. 

Part of me regrets having the test, because there is bliss is not knowing. I'm a planner at heart, and I couldn't resist the idea of having a 9-12 month lead time on f'ing cancer, to do some epic life shit while I still can. But now that the test is pending, and the gravity of a positive result has settled in, I'm absolutely terrified. Maybe I won't look at the result - I wish I had that kind of self control. But right now cancer is in control, and whatever the outcome here, I can at least take some control back for now. 

 

Breast Density - Why It Matters, and Why the FDA's Ruling Comes Up Short

Last week, the FDA updated its rules about mammography and breast density. It is now required that women be notified of their dense breasts, and suggests "additional screening" if indicated. 

OK, well, it's a step in the right direction. I had dense breasts. So dense, in fact, that the 3.6 cm tumor growing there was missed year after year on mammogram. Unfortunately, those mammograms were dictated as Birads-2: "benign". They commented on density, yes - but the leap from 'you have dense breasts' to 'density hides cancer on mammogram' never happened in my mind. (Pictured above: my very dense left breast, with no evidence of cancer in 2020, that in fact, had a big lobular cancer.) 

So in 2020, when I felt a lump in my left breast, even though it felt weird and wrong, I LET IT GO. I did NOT SEEK CARE FOR A BREAST LUMP - please re-read that several times. I'm a physician. I knew it didn't feel right. But - "I had a normal mammogram 5 months ago, so this CAN'T be cancer" was my thought. 

How stupid I feel in retrospect. How angry I am that I waited another six f*ing months before getting that thing checked out. That thing that was very much a cancer, a big one, sitting there invisibly on my mammogram. I let the false reassurance of that mammogram delay my diagnosis. I knew my breasts were dense. I know now that that having dense breasts

a) increases the risk of developing breast cancer (independent of family history, lifestyle, BMI, genetics)

b) decreases the sensitivity of mammogram 

So the new FDA rules requiring notification of density and suggesting additional imaging for women with dense breasts are great. But there is zero mandate that anyone actually pay for that additional screening - so it's all fine and good to suggest maybe you need an ultrasound or an MRI, but those are expensive and require either good insurance, or mandates for coverage. Most women in the US have neither. You will need to advocate for yourself, especially if you are young and "without risk factors", to get additional screening. But please do it if you have any concerns, and dense breasts. Do not be falsely reassured as I was by "normal" mammograms. They weren't normal, they were hard to interpret due to the density. Density plus the sinister pattern of lobular carcinoma were a deadly combo that fell through every possible hole in the Swiss cheese of cancer screening. I did everything I was supposed to do, and my tumor was already stage 2 by the time it was diagnosed. 

Re-read your last mammogram report, and find out if you have dense breasts. If you do, get additional testing for absolutely any concerns or changes.
It might save your life. 

Scanxiety Day

 

Another scanxiety day for me - first MRI since double mastectomy, looking for local recurrence in chest wall and internal mammary lymph nodes. 

I hate cancer. Two years in, there’s no less anxiety, or fear, or anger. It’s not always front and center, but it’s always waiting in the wings. 

Every scan raises the executioner’s sword over my head - will today be the beginning of the end? How quickly will the sword fall? 

Hoping the radiologist takes a long lunch and doesn’t get around to this one today. I don’t want to know. I want to say “Not today, cancer” for just one more day. 

#lobularbreastcancer#doublemastectomywithoutreconstruction #breastmri#scanxiety #nottodaycancer #cancerlife#spotthecancerpatient

2 Years N.E.D.

We happened to be in Grand Teton National park on March 1, 2022 - my one year NED anniversary (no evidence of disease). We decided to make a tradition out of it, and spend every March 1 in a different national park.

This year‘s NED anniversary brought to you by Zion national Park in Utah. No evidence of disease x 2 years. Take that, breast cancer. 

2 long, fear-filled, anxiety ridden years. But as far as I know, the cancer left with my breasts two years ago, and has been gone since. As far as I know, and that’s as far as I can go. So onward to adventures celebrating life in beautiful places, one year and one national park at a time. 

Grateful to be here today, with @beewood17 by my side, ready to stave off breast cancer for another year. 

#twoyearsned #fuckbreastcancer #ihavelobularbreastcancer#youngwithcancer #doublemastectomywithoutreconstruction#noboobsnoproblem #notputtingonashirt #gratitude#keeplivinglife #zionnationalpark #angelslanding #doepicshit#optoutside #nottodaycancer #fuckcancer #fuckmenopause#stillaliveandkicking #takethatcancer #cancercansuckit

"What are your priorities?" An interview with Tracy Cushing, MD MPH

Honored to be interviewed for YouTube channel FLATworks with Sarah Nash. Always happy to share my reasoning and thought process behind choosing aesthetic flat closure, and as I soon mark the two year anniversary of that choice, I remain convinced it was the right one for me. Thanks for letting me share my story! 

The Emperor of All Maladies indeed

Next up on the cancer reading list: "The Emperor of All Maladies" by Siddhartha Mukherjee. An absolute must read whether you are a physician, a cancer patient, or just love biographies. This one is a doozy. 

The entire history of cancer - from its first appearance in hieroglyphics, to the development of the radical mastectomy, to the most recent drug advances - this book chronicles it all. If you don't understand cancer biology, you will have a better understanding after reading this book. If you don't understand how drugs and treatments are developed and tested, you will after reading this book. 

Cancer has been around as long as humans have been. What makes it such a terrible and terrifying disease is that it is not an other - not a bacteria, a virus, a parasite, a poison. It is US - our own cells, our own genetics gone haywire, our own bodies betraying us. And this "US"-ness of cancer is what makes it so hard to cure or treat. We can't kill cancer without killing us, so far, and that is what makes cancer the emperor of all maladies. 

If you are scared that cancer research is languishing despite its funding, and that there haven't been many broad, meaningful breakthroughs since immunotherapy was developed, you will find reasons for your fear in this book. 

If you are a clinician, you will be fascinated by the trajectory of this disease, as old as humanity itself, and by our inability to crack the code of cancer. It is a humbling, educating, daunting read. I only cried once, on the last page. For a cancer patient, getting through a 400+ page book about cancer without crying was a big feat.

Most patients don't want to read about cancer in their "free" time, and honestly there were days this book was too heavy - literally and figuratively - to pick up. But I learned a lot from it, and on the days when I could handle it, I'm so glad I did. 

Another Loss

Today I am struggling. A fellow physician, a lobular cancer patient, a fellow LBCA board member, died from metastatic lobular cancer. 

I sent her smoothies 2 weeks ago when she was DIAGNOSED as metastatic. We were previously chatting about meeting up at a breast cancer conference, or a women in medicine retreat. She was only diagnosed a year ago, stage 2. And now she is gone. 

This is a fast series of events, even for a disease as cruel as breast cancer. I am struggling to comprehend how this could happen so quickly. I long ago gave up trying to comprehend why - the biological why still interests me, but the rest of it - there's no answer. Why this particular badass woman surgeon, wife, mother? There is no answer. Cancer, and biology, do not care one little bit about whether you are good or bad, young or old, whom you might leave behind. 

But since there is no answer to the why, there is only the immediate grief and sadness for her loved ones - and then the overwhelming, gut punching fear: what if that's my fate, too? Just when you manage to put cancer in a corner and move on with your life, it has a way of smashing back into consciousness, ready or not. 

I don't know how to process this loss. A woman with whom I had so much in common beyond breast cancer, and whose life was taken by the disease that stalks my every waking moment. I hate cancer so much. I hate that medicine has so very little to offer for recurrence prevention, and that lobular breast cancer in particular is sinister in its occult spread. I hate that I have to be afraid of this every single fucking day of my life. 

I tried hard to enjoy the sun on my face and a swim in the pool today. I felt grateful to be alive and with my human and canine families. But it was such a bittersweet gratitude - overwhelmed by sadness for another loss, and another family's grieving. And I am still struggling. 

(graphic courtesy of FC Cancer Foundation)

2 Year Cancerversary

January 27 - the day the cancer came. Specifically, Wednesday Jan 27, 2021 at 3:05 PM. The phone rang. The radiologist was calling. "It IS cancer."

January 27, 2023 - two years since that call. My entire life perspective and outlook changed on that day in 2021, and two years later, I still haven't managed to put breast cancer in the background. On a shelf. In a box. Far far away from my mind and my heart. Maybe next year, or the year after that...or maybe never. 

Two years into this journey I can honestly say I've learned - a lot. More about cancer biology and pharmacology than I ever wanted to know. More about myself as a patient, a physician, a mom, and a wife. While this day is not a celebration by any means, it is a marker of time passing, and a reminder that no one is guaranteed anything in this life. 

Two years ago today my life clock started ticking down a little faster - and yes, the threat of reduced life expectancy and early death has definitely changed the way I want to be on this Earth for whatever time is left. I no longer have tolerance for anything that is either wasting those minutes, or making them more difficult. I have a deeper appreciation for small moments, little gestures, and presence. I am ever conscious of spending my time wisely. 

I death-cleaned my house during these two years: decluttered the mess, packed up the family heirlooms, and trashed anything I didn't want my husband or daughter to have to deal with later. It was cathartic, I love my de-cluttered space, and I love knowing I can tie up loose ends before I'm desperately clutching the ropes. I wrote letters and cards to be given in the future, in case I'm not here to give them in person. I wrote my obituary, so my husband wouldn't have to. The rabbit/virgo is very pleased with this organization; the cancer patient, not so much. 

The cancer patient needed to make an even bigger leap, a bigger change, a harder transition. Today I am resigning my position as an associate professor at the University of Colorado School of Medicine. This was not an easy decision or choice, but cancer doesn't care about ease or choices. Two years after diagnosis, I can see that decades of night shift work were clearly carcinogenic (night shift is classified as a carcinogen in some countries), and bad for my health. Two years after COVID, practicing front-line medicine in the US has become a nightmare for many providers, and the patient in me finally said "Enough". 

This transition will be almost as painful as cancer - I've been an academic clinician for 15 years, and it's all I've ever known professionally. I am both terrified and excited: the rabbit and the cancer patient. I don't know what's coming next, and that makes me uncomfortable, but I know that this is the right decision for my health, both physical and mental. 

On my 2 year cancerversary, I am retiring from academic medicine. It has been an amazing career, one of which I am proud, but it's time for me to move on. From night shifts, from a broken health care system where there is little joy in practice. My daughter, my husband, my rescue pups - these are my joys, and the things I need to prioritize in my life. And my SELF. No one ever wrote they wished they'd worked harder or longer on their tombstone, and at the end of days, no one looks back on diplomas and resumes as their accomplishments. So maybe a little thank you to cancer for giving me the push I needed to make some big changes. But only a little. The rest of it has been shit, cancer, so feel free exit stage left and never come back. 

 

The First Cell - Why We Aren't Curing Cancer

     Twenty-one years ago, I graduated from medical school. I learned a lot of things, including a bunch of things about cancer. Cancer scared me before I understood what it was, because it took my grandmother away from me. Cancer scared me even more when I learned about it in medical school, because it is a sinister, brilliant  disease. I learned the names of toxic drugs and cell receptors and various terms that I rarely thought about in the subsequent 21 years while I practiced emergency medicine. 

    Then I was diagnosed with breast cancer. Almost 2 years ago exactly. Surely something - anything - had changed in those intervening years. My screening mammogram had failed to diagnose my invisible tumor, and we still don't have any better screening to find it, but OK, surely at least the treatments were better? Surely leaps and bounds had been made in understanding cancer biology and disease? 

    I was horrified to learn that the more I read, the more I felt like a second year medical student with Harrison's Internal Medicine textbook open on my lap. There had been very few breakthroughs in understanding tumor biology. The same drugs we were using twenty years ago, we were still using now. My "other" type of breast cancer, invasive lobular cancer, despite representing 15% of all breast cancers, accounts for less than 0.5% of breast cancer research. 

    And yet -  how many BILLIONS of dollars have been poured into cancer research in those 20 years? (NCI alone spends $6.4 billion per year.) We measure success in the extension of lives by weeks or months - instead of stopping malignant cells from becoming cancerous tumors in the first place. We implant human tumors into mice and expect them to act like they do in humans. We focus on "battling" cancer once it has presented itself, but for the people living in Purgatory like me, we cross our fingers and hope for the best. No one cares if I have circulating tumor cells, because if we found them "it wouldn't prolong life anyway". Maybe not. But an 18 month lead time on the beginning of the end would be a big gift - a gift of time before decisions are made about treatments. Time to travel, to quit a toxic job, to reunite with loved ones. To experience what remains of good physical health, whatever it looks like now.

    Today I finished reading "The First Cell" by Azra Raza. She is a hematologist/oncologist who put into words and verified all the things I feared: we really haven't made much progress in understanding cancer. Imagine if there was a pill I could take, like antivirals that prevent HIV from becoming AIDS, that would prevent rogue cancer cells from becoming tumors. We have turned HIV into a chronic, manageable disease within my lifetime - I took care of men dying of AIDS in the 1980's in New York, when we knew nothing about it. Cancer has existed as long as there have been cellular organisms - for all of humanity's lifetime, anyway - and we haven't made truly meaningful progress outside of screening. Billions of dollars. If you want to understand how that's possible, I highly recommend this book. It was vindicating as a physician, but terrifying as a cancer patient. 

    

2022 in Medals and Numbers

Cycling: 4362 miles (209,956 ft of ascent!) 

Running: 331 miles (basically stopped for a few months due to a knee injury) 

Swimming: 264,169 yards

1975 - the year of my birth, the year of the Rabbit. I am a rabbit - I avoid confrontation and conflict, I enjoy routine and safety. Rabbits do not cope well with change or drama. Breast cancer brought both. 

2022 started off well - one year cancer free, working on breast cancer advocacy. I went hours at a time - sometimes even a day - without thinking about breast cancer. 

Sadly, the universe decided not to stop at breast cancer in giving me yet more change and drama. Since October, my professional life has been in upheaval, and I am facing so much loss - career, retirement plans, health insurance, maybe even my home...all while being in one of the darkest places of my life mentally. The last 3 months have been as difficult as anything breast cancer threw my way - maybe even worse. Cancer never made me want to crawl in a hole and not come out - quite the opposite: I wanted to leap out of whatever holes I was stuck in and start really living. 

Cancer made me sign up for Ironman Alaska, and cancer is what makes me exercise like it's a prescription for medicine. I did pretty well this year for a post-menopausal, osteoporotic, double mastectomy 47 year old - until my anxiety and depression derailed my exercise. I went weeks without swimming. I didn't sign up for any races, and wondered if I ever would. The numbers above then really reflect everything until October - since then, other than daily yoga, even exercise has failed to bring me joy. 

Well, I have no choice but to leave the safety of my rabbit hole, and start living. The kick in the ass I need to make change is going to really hurt for a while, but I hope it's only to find a bigger, better, safer rabbit hole. 

Last Race of 2022 - All the Feels

 

So many emotions yesterday - racing the inaugural #monarchtriathlon in Kingman, AZ. 

So grateful for @shestronginc for celebrating and honoring women who have braved cancer. This was a really tough bike course with 4000+ ft of climbing in 30 mph headwinds. I was honored to place third overall - and all day long thought “Take that, breast cancer.” It was so moving to see others out there on a similar journey. 

Thank you @brandy.ramirez for making this possible, for this awesome medal - with a removable charm, and to @runtrimagfor the beautiful #shestrong kit and cap.

@beewood17 you are the ultimate race volunteer and spouse support. So grateful today. 

#fuckbreastcancer #lobularbreastcancer#lobularbreastcanceraliance #triathletewithcancer#racingagainstcancer #racehardware #fuckmenopause#cancerdidnotbreakus#doublemastectomywithoutreconstruction#noboobsnoproblem #teamsfq #teamvpa #biscaycoaching