NHL - not just the National Hockey League, unfortunately.

I guess it's a good thing I didn't name this blog specifically about breast cancer, because now apparently it's a non-hodgkin's lymphoma (NHL) blog (until the next one?). I hadn't thought about breast cancer for 20 odd years since med school when I was diagnosed, and I have thought even less about NHL (minus getting a laugh at the Curb Your Enthusiasm episode reference to Hodgkin's being a "good lymphoma"). 

Pulling out my basic pathology textbook, my Harrison's internal medicine, feeding my pathology report into Open Evidence, and absolutely overwhelmed by having to revert back to the medical student inside me to re-learn the language of an entirely new cancer. 

Here's what I know: I have a non-Hodgkin's lymphoma. It is either follicular lymphoma, or it's DLBCL (diffuse large B cell lymphoma). These have wildly different treatment pathways, biologies, treatment responses, and prognoses. One requires a bigger harder hit, but is curable (DLBCL) - the other is the sleeping demon that requires less poking, because it is slower and sadder and not curable. It may lie around for quite a while doing nothing, but it is not going away, and it is Not Curable. 

When I was diagnosed with breast cancer, my head spun so quickly that it missed the opportunity to enroll in clinical trials as a treatment-naive patient. I did look for some lobular trials but didn't find any, then pretty much turned towards standard of care. (I did enroll in every patient registry, long term surveillance, and non-clinical breast cancer trial I could find, because I believe in evidence, science, research, and in using my sad ass genetically mutated body to improve the chances of other people surviving what I cannot.) I don't know that it would have made a difference in breast cancer, but since this is my second cancer rodeo, I know now that researchers salivate over people diagnosed with cancer but who aren't yet treated: it's the early, rare opportunity to see if a newer or different therapy is better than what we already have. 

So, I filled out an intake form for the Blood Cancer United Clinical Trial Support Center Referral (https://bloodcancerunited-forms.careboxhealth.com/?IRC=NOIRC) and already got a phone call from a lovely RN navigator who was my first encounter in this arena. They will notify me of any clinical trials I might qualify for, now and forever, as my disease progresses, until I am no longer in need of a trial. She offered advice, guidance, and reassurance that I never felt from a breast cancer organization or researcher. I'm already so impressed with the Blood cancer community, and I've only been here for 24 hours. 

If somehow you are newly diagnosed with a blood cancer and find yourself on this blog, I highly recommend signing up with them. While the clown show of insurance, prior authorizations, appointments, and scans continues its circus, at least I already have a human on my team, answering my questions, and who doesn't care what my insurance coverage is. 

Next steps for me: a PET scan, an excisional biopsy (cutting out the lymph node they merely stabbed 4 times), and waiting for a call from the RN navigator at MD Anderson. I want to capitalize on my early status to enroll in any clinical trials they might have, to establish care with the absolute experts, and to make sure every last sample, scan, lab test, therapy, and treatment recommendation is made with the highest level of evidence and expertise and right now all signs point to Houston. (United frequent flier miles, here I come!) 

I'm also waiting for certification from the World Trade Center Health program for my second cancer. As a 9/11 responder, I am certified for my breast cancer and have received care for that under the program, for which I am grateful. Until they certify my lymphoma, I am on the hook for paying for anything related to its treatment. 

There could be an entire blog post about the absolutely harmful disaster that is our current health care insurance system, but suffice to say I do not have employer based health care and neither does my spouse, despite us both being health care workers. Because we are part time workers, we depend on an ACA healthcare plan like roughly 20 million other Americans who rely on this for health care (and I truly thank former President Obama for making that happen). It is expensive, even for routine primary care. Without it, I could either go bankrupt paying for cancer treatment or forgo treatment altogether. While I am fortunate enough not to have to make that decision (and to be clear am NOT seeking financial support) millions of my fellow cancer patients are making exactly that choice, and it's easy to see why GoFundMe campaigns are now the largest source of medical funding for many Americans. 

Our society makes decisions that lead to consequences. This was never intended to be a political blog or post, but the public health student and part time worker inside me know that you can't talk about being a cancer patient in the United States without talking about these things too. We have chosen so far as a society to blame people who become sick and hold them responsible for costs they had no choice but to incur, rather than deciding to collectively pool all of our risk so none of us falls through the cracks. (Believe me, I'd much rather do something else with a few thousand dollars than pay for a PET scan....) We can make different choices, and if you are still undecided how to vote next week, perhaps give a hard look at any candidate who wants to change the healthcare system. If it's not an important issue for you today, it might be tomorrow, or soon, for you or someone you love. We can do better: for cancer, for long term illness, for the frailty and complications of growing older. We can choose a different path - if enough of us care to do so. 

My own path right now is a slow walk towards definitive diagnosis, without which there is no treatment plan. It moves at a glacially slow pace, and I don't do well with waiting, so that will be my daily challenge - to wait. Walking slowly, one foot in front of the other, one hour and day at a time, waiting. 

Survey Says.....

 

If you are Gen X, you might remember a game show called Family Feud, where teams of family members would try to agree on the most common responses to certain survey questions, against other teams of families ranking the same responses. Like, "Name the first thing you'd buy if you won the lottery?" and if you guessed the most common answer, the host would say "Survey says.....Buy a house!" or whatever the most common survey answer was. 

Well, after days of mental gymnastics trying to bet on what the most likely cause of my swollen lymph nodes would be, my Survey Says....Follicular B cell lymphoma. Not breast cancer, the beast I know and understand. A totally new, separate, different in literally every way cancer. 

What in the actual fuck. Who has two cancers at age 51? Whose karma is that epically fucked? When I was first diagnosed with breast cancer, I had genetic testing done and it turns out I wasn't born with defective genes. My genes, epigenetics, proteins, DNA and cell functioning have been derailed and deformed by the environment I grew up in - Gen X, microwaving plastics since 1975. 

Since I know I wasn't born like this, I know inhaling debris from ground zero for a month, working 20 years of night shifts, and a largely stressful job in health care almost certainly screwed up my biology against any chance it had, no matter what other healthy choices I made. 

I learned the first time around that asking "why me" is a ridiculous question when it comes to cancer. It's tempting to ask "why me a second time", but I know there's no answer. Cancer doesn't care. I do know that I have to learn an entirely new vocabulary, a new subset of cancer lingo, new biomarkers and drugs, and that there will be an ungodly amount of radiation, testing, prodding, and possibly chemo in my future. 

It feels unreal to be here again, so soon. A quick and terrifying search of this beast identifies it as "indolent but incurable". Like right off the bat, the first 5 things I read about it said "incurable". While we always hesitated to use the word "cured" from breast cancer knowing it can return, I certainly never read anywhere that it was presumed "incurable" at early stages. This cancer is not curable. It's like a demon in hibernation....it might stay quiet, sleeping, something that can be "watched" - and it could stay that way for a while. Poking it too soon with drugs or radiation might actually wake it up and cause it to become aggressive and rapidly fatal. So maybe don't poke it, don't try to treat it, just wait until it wakes up and tries to kill you - or doesn't. These seem like pretty lousy options. 

I've gotten some advice on where to go, and who the experts are, and we are doing all the paperwork and busywork that happens when you get a cancer diagnosis. My work colleagues have come through in a big way getting my shifts covered for tonight and tomorrow because I'm in no position to function in the ER, and I am so grateful to have the next 48 hours to process this new information. I won't have any more info on treatment or next steps until after a PET scan, so now I just have to sit with the reality of a second cancer diagnosis and another ride on the cancer roller coaster. It is terrifying, and I want to get off this ride. 

Diving With Sharks - A good reminder that death comes for us all

 

15 days ago I flew to Fiji. I promised myself I'd focus on being there, not on what's here, and boy did I ever - I almost drowned in my first diving accident, I burst an ear drum, I did three different dives with enormous sharks, and I completely immersed myself in the beautiful warmth and hospitality of our Fijian hosts. There were even a few moments when I forgot about cancer. 

I've never had any issues diving, though I'm not hugely experienced. My only idea as to what happened is I descended too quickly, didn't breathe enough while equalizing my ears, and panicked when I couldn't expand my lungs. I took my reg out of my mouth, I swallowed water, I shot up towards the light of the surface and thought "This is it - I'm going to drown". I was about 40 feet down, close enough to see the top but far too deep to be near the sweet, sweet air I was hungry for. I surfaced far too quickly in an absolute panic, couldn't swim or inflate my BCD and just bobbed there sobbing. Easily the closest I've ever been to dying and by far the most terrified I've ever been - and for a brief time, there was something scarier than cancer. 

I forced myself to dive again the next day, and I'm so glad I did because holy cow - the sharks. Tiger, bull, nurse, reef, lemon - and so, so many. From 30 ft long pregnant tiger sharks to 3 ft long baby reefs, they were awesome to witness. I saw them on 3 dives, and was close enough to see their teeth and into their eyes. They were not not scary, but I didn't feel scared. We're not their natural prey, and frankly death by tiger shark doesn't sound that much worse than death by metastatic cancer. My immediate risks far overshadowed whatever I was worried about at home, and for a few days, that was exactly what I needed. 

I showed up for my biopsy on 10/21. This is biopsy #4 (thyroid, breast, skin, now lymph node) in my 51 years of life - my 4th go around on the "is it or isn't it cancer" carousel. I want to get off. I don't want to have to be the one to tell the person doing the biopsy how to label it correctly. The radiologist was pretty uninterested and not especially concerned .... until I said "could you please make sure the samples say history of LOBULAR breast cancer?" ... and her entire demeanor changed. She sighed, frustrated, and said "all it says is history of breast cancer. I'll make sure it includes lobular."

Why am I the one making sure my pathology samples are correctly labeled? Why do I have to remind the oncologists that of all breast cancer metastases to the GU organs (vagina/vulva/uterus/cervix) EIGHTY EIGHT PERCENT OF THEM ARE LOBULAR. Sorry for the all caps rant but GODDAMN this makes me mad. How many ILC patients have no idea that their samples don't specify what kind of breast cancer they had, leading to misses and delays in diagnosis. This is such bullshit. The radiologist who took the samples got real serious after that, I got 4 giant pokes and core samples taken, and now I wait. 2-3 business days. They will likely post the results in my portal before my oncologist ever sees them. I will be left to make sense of and process them myself. At least they didn't drop at 5pm on a Friday. A stay of execution until Monday at least.

I remember the last days BC - before cancer - before Jan 27, 2021 - when I waited for the results of the breast biopsy, and I enjoyed the last days of thinking I might still live a full life, that I might not have to face disease or early death, and I'd give pretty much anything to go back to BC. AC - after cancer - I did what I had to do for 5 years of treatment, I followed doctors orders, I tried to live a healthy life so maybe there would be an after after cancer. 

And here I am again, in the truly awful place between questions and answers, symptoms and diagnosis, disease and treatment. It's almost comically tragic that my best case scenario is an indolent B cell lymphoma - am I really hoping for lymphoma? Has it come to that? Indeed it has. I have at least this weekend to dwell in the in between, a few days left when it might still be after cancer, not new cancer; when I can still pretend I'll retire and grow old and enjoy years of life with my husband; when I can have a few days without cancer. It took me 5 years to get to the point where I could sometimes go days or even a week without thinking of breast cancer - I fought hard against my own mind to get there, and now it feels all for nothing. Right back where I started, except this time I know more, the prognosis is likely worse, and the treatments more brutal. I am actually grateful they didn't get to my samples before the weekend so I can live in the unknown just a short time longer. 

When It's Not Your First Cancer Rodeo

 

In late September, I had the privilege to attend the ILC International Symposium in San Francisco. It was so great to hug my fellow advocates in real life, to brainstorm with researchers and clinicians, and to hear about the amazing work being done to crack the code of lobular breast cancer. 

I came home and went about my life as I do even during Breast Cancer Awareness month - work, dogs, house chores, and it has been so warm here that outdoor swimming is still a thing. I put on a swimsuit - and there they were. 2 giant lymph nodes sticking out of my groin, wildly larger than the other side and visible to the naked eye. Once before, 7 years ago, I felt a lump in my breast that made me sick to my stomach. I had that same feeling seeing those nodes. 

I've had a few days to spiral out of control, to see my oncologist, and get an ultrasound all of which just confirms what I already know. These are bad. They can't tell from ultrasound exactly how bad, but they have some very bad characteristics on the pictures that indicate what they are - most likely metastatic deposits of cancer. I've gone down the differential pathway that has ruled out infection, other swollen lymph nodes (none), don't see any weird moles or skin changes on my leg, and now we're left with the exciting game of "find the cancer". 

This would be weird for breast cancer - usually. For ILC? It loves the bladder, the uterus, the outer lining of the GI tract - all things in the area that could be full of my breast cancer. It also could be an entirely different cancer - vagina, cervix, rectum all drain into those nodes. The differential is wide, and it is bad. How bad? Don't know. But cancer in lymph nodes is cancer that has spread from elsewhere (except lymphoma), and that means metastatic cancer by definition. Sure, they could be "local" metastases, but that isn't very reassuring. If they are cancerous, they are spreading. 

Here's the part where it's not my first rodeo - I've already had the freak out of a first cancer diagnosis, and part of me always expected this shit to return. I just didn't think it'd be so soon, or that I'd have an entirely SECOND cancer at the age of 51. I'm not sure right now what these are and my brain is out of control with the possibilities, but I've always been a "more info is better" person and thus am already planning for the absolute worst outcome. 

I'm supposed to get on a plane tomorrow and fly 1/2 way around the world for a scuba trip that is my dream - sharks, night dives, wrecks, beautiful corals. My brain knows that not diagnosing this shit for another 12 days will make ZERO difference in my life expectancy - which is entirely dependent on what type of cancer cells these are and how aggressively they behave, not making the diagnosis tomorrow. So cancelling the trip makes no sense from a medical perspective. But I don't think I have enough mind control to put this out of my head and enjoy the trip - though the thought of this being my last scuba adventure for a while does make me think about just going. 

Wherever this is headed, it's not good. Once again facing scans, needles, biopsies, radioactive tracers, maybe surgeries, maybe radiation, maybe chemo. And then, of course, facing death. It's too soon and it's too much after only finishing treatment for breast cancer 5 months ago. I was finally starting to see the possibilities of a few years between now and later when we could enjoy our lives, our home, our travel, our puppies, and each other. 

When I think about dying my biggest heartbreak is leaving my husband - whom I met in 2016, and with whom I've only had 10 years. I want more time. I want to die of old age with him by my side 30 years from now. I want us to be able to enjoy all of the benefits of the brutal work we did in healthcare for 20+ years. We met so late in life, and my only hope was to have as much time together as possible. I don't want 5 years of bliss followed by 10 years of a slow fight against a cancer I can't beat, that ends up defining whatever time we have left. So today I am deciding not to let that happen. 

Maybe I have metastatic cancer. It's sitting there in those nodes and 12 days from now it'll still be sitting there. But if I could have gone scuba diving with sharks in the meantime, I don't think I want cancer to take that away from me. I don't want it to define what's left of my time on earth, to ruin my marriage and my family any more than it has. I want people to think of me as the person who has traveled to 6 continents, reduced her own shoulder dislocation, got lost in the New Hampshire wilderness in the winter, and loves animals and mountains. I tried not to let breast cancer define me, though it changed me. Trying to destroy metastatic cancer has a way of defining one's life whether you want it to or not - but I think I'm going to try again to be that person I was before and without cancer. 

Fiji - here I come. Carpe all the fucking diems. And fuck cancer. 

Breast Cancer Index Test - What is it, what mine says, and why I'm saying goodbye to Letrozole

 Sometimes it's hard to believe I'm 5 years into this process - other times I can't even remember what life was like BC (before cancer). 

For five years, starting 5/1/21, I have taken my estrogen blocking meds (letrozole) every single day. For five years it has worn away my bones, my hair, my youth, my skin, my private parts, and my physique. My body is almost unrecognizable 5 years later. But I religiously took that pill every damn day because my choice is to do everything I can to prevent cancer recurrence. 

That was my personal choice, and one that I can comfortably live with knowing I did whatever I could. Sadly the biological crapshoot of cancer might pay no attention and it might have all been for nothing - but it did give me at least 5 years without a recurrence, and here we are. 

The BCI (Breast Cancer Index) is a genomic profile of one's specific tumor, and it gives a binary yes/no answer to whether 7 vs 5 years of anti-endocrine therapy will be useful in recurrence prevention. The data seems clear that 10 years of therapy doesn't show much benefit in recurrence prevention compared to 7, but it does significantly increase the risks and side effects of therapy such as osteoporosis. So somewhere between 5 and 10 years seems to be the sweet spot, and the BCI helps patients decide whether to continue from years 5-10. 

As you can see above, my answer was a definitive NO. Regardless of whether I take 2 more years of letrozole or not, my overall risk recurrence from years 5-10 is 4.7%. (Which means a 95.3% chance of NOT having recurrence, which is a number I like....) Given the severe hit to my bones this drug  has caused, I am partially relieved to stop it. I don't think many of the other changes will reverse given menopause is permanent, but there's a chance some of my bone density will recover, and for that I would be incredibly grateful. 

But I am not entirely excited about stopping this drug - it means I have nothing standing between me and cancer besides my own lifestyle choices, my body's own ability to fight recurrence and metastasis, and basically a leap of faith. When you know there might be cancer cells floating around, just waiting for the chance to rear their biological heads, not doing anything specific to fight it feels icky. It's motivating me to use everything in my own control to keep my body hostile to cancer recurrence, and will talk about my own integrative approach to recurrence prevention in a post soon. I know there are things I can do to prevent recurrence - and I know those might not make a difference. 

But for now, I am at peace knowing I took the 5 years of anti-hormone therapy, and ultimately the side effects and crappiness of it were worth it for me, such that if I am faced with recurrence I don't have to wonder "what if I had done.....". I didn't do chemo or XRT - and I don't regret the chemo choice, but sometimes "what if I had done XRT" creeps into my mind when I'm fearing regional lymph node recurrence. But at the time, I decided the risks of XRT were not worth the benefit, and someday if I had to look back at that decision from a place of recurrence, I would be at peace with it. 

There are no guarantees in life, and even fewer when it comes to cancer. We wish we could predict who would recur, who is low risk enough to avoid medication altogether, and who might spare themselves the side effects and misery of endocrine therapy if their cancer would just come storming back anyway. We can't know these things, so we make our individual decisions with the (hopefully) best evidence we have. 5 years of letrozole was the right path for me. With fear - and some joy - I cancelled my auto-ship from the pharmacy today, and will be pill free as of 5/1/26 after 5 long years. My bones took a significant hit from this therapy so the focus now is building them back - and keeping my body inhospitable to cancer using its own metabolism, without the safety net of that little yellow pill. 

5 Year Cancerversary - A Bittersweet Anniversary

 

March 1, 2026 - 5 years ago today, I rolled into an operating room with my boobs, and a few hours later they were gone. As far as I know, my cancer went with them. 

I found myself in a national park on March 1 in 2022, and decided to maintain the tradition of celebrating each milestone at a park. This year, I honored the day in Joshua Tree National Park, amidst the cholla cacti, the Joshua trees, the mountains and desert, and grateful as always to be alive to celebrate. 

But there's a darker side to the passage of this time, and I've written about the burden of late recurrence before. For many cancers, a 5 year mark with no evidence of disease is as close to being "cured" as one can be - it's when insurance no longer considers cancer a "pre existing condition" anymore, because after 5 years of being cancer free, the assumption is, you're good to go. And for many cancers, this is true. 

My crappy, less common, less studied, and less understood breast cancer isn't the 80-90% of diagnosed breast cancers - it's a sneakier, more sinister subtype that has the sad distinction of INCREASING risk of recurrence later and later. So at 5 years, when most survivors can celebrate, I know that my real risk is just starting. The risk will continue to rise and be ever present for at least 20 years - the longest recurrence I've read about is 23 years after diagnosis. Think about that: diagnosed at age 45, I might have a recurrence of my breast cancer at age 65, 70, 75. I will most assuredly live long enough to have that recurrence, provided something else doesn't kill me first. One rogue cancer cell that hid in my bone marrow, or lymph node, that left my breast before it was removed, can turn into metastatic cancer years or even decades later. 

This is an incredibly difficult mental burden to bear. There is NEVER a reprieve from the fear of recurrence, and there is never an actual "in the clear", "cured", or "cancer isn't coming back" moment. While life moves on, people forget, and think everything is back to normal, it isn't. I've written before about the "after" cancer fallout on body, health, sexuality, and the invisible scars of cancer treatment that no one can see, but that are very much present for years after treatment ends. But the fear of recurrence, fear that every ache or pain is cancer, fear that cancer cells are still lingering - that just continues to grow, with each passing year, and with increasing risk. 

I'm grateful to be standing on top of Warren Peak 5 years later, and to still be saying Fuck Cancer loudly and proudly. For today, I'll take the win. But inside, I'm as fearful as ever, and struggling to manage that ever present fear of recurrence. 

Jan 27, 2026 - 5 years into the cancer journey

2025 was a crap year, and I am glad its over. Started 2026 in one of my favorite places (New Orleans), seeing my favorite music (Galactic) - and have lots more music on tap for this year. Music to support my soul, my heart, my mood, and my mind. Music is therapeutic and an easy way to tune in while tuning out. 

2026 - Time for resolutions, new year, new goals, new thoughts. Once you have a cancer diagnosis, the passage of time, the marking of years, the anniversaries - they take on new meanings. 2026 marks five years since my cancer diagnosis. Jan 27, 2021 to be exact. The day the cancer came. The day my life changed, and the day I can never go back to "before". 

For most cancers, including some types of breast cancer, 5 years marks a huge milestone: sighs of relief, sights of light at the end of a tunnel, thoughts of life beyond and without cancer. It's when you can start to apply for life insurance again, as actuaries think 5 years cancer free means you're back to normal risk. 

Not so for my shitty and less common breast cancer. It is unlikely to recur within the first five years, and in fact the risk of recurrence is just starting for me. The risk will grow from now until at least 2036, if not further - because one rogue cancer cell can reactivate decades later and cause metastasis. 

It is a heavy burden to bear, especially as people around me forget I ever had cancer, tell me I "look good", and think the risk is over. They wonder why I can't move on, get over it, put cancer behind me. As a recent cancer patient said to me, "I think the survivorship is even harder than the disease." 

And indeed, it is. In the heat of battle, in the whirlwind of diagnosis, scans, lab tests, treatments, and pills - there is a plan. There is action. And often there are visible signs of what someone might be going through. But survivorship - what does that look like to other people? No one can see the scorched earth of my body that cancer left behind - the small everyday changes that serve as annoying reminders, never letting the cancer go. 

I will never be the same. No matter how much self care, healthy habits, and clean living I do - I will never be the same. My curls will never grow faster than they can be cut. My physical stamina and strength will never be what they were when I was racing triathlons and training every day. Even with all the same goals and the same workouts, my body is not the same. Starving a female body of estrogen acutely overnight with ovary removal, and then for 5 more years with endocrine blockers does some things that cannot be undone. 

There are silly superficial losses (my curls, my thick hair, my muscle tone), and then there are more profound and deep losses (see my earlier post about sex after menopause; sleep; thermoregulation; my total body fat distribution and pudgy middle). Sure, I feel grateful to be alive, to be looking ahead at stopping my endocrine therapy, and to not be in "active" treatment. But the risk isn't over, in fact it has just begun, and that alone is terrifying. 

2 more data points on the journey ahead: one, my latest Signatera results above, showing no signs of circulating tumor cells in my blood and another big sigh of relief until the next test. My Breast Cancer Index test is now pending, and we'll use that to determine whether I need 2 more years of endocrine therapy, or if I can finally be out of active treatment and living in the "no evidence of disease" world of cancer. 

No evidence of disease. Except there is evidence - it's in my scars, my painful arthritic bones, my dry private parts, my thinned hair, my aged skin, my crumbling physique - the evidence of my cancer IS there, it just takes a sensitive eye to notice. 

Yet Another October is Upon Us

It has been a few months since I checked in, and honestly, I've been trying to check out. The world is a scary, sad place right now, and my little experiences within it are seemingly less meaningful by the day. This has been one of the worst years of my life, and the struggles continue - surgery #7 in 5 years happening today, not cancer related, but still. 

A quick recap: 

Started 2025 feeling celebratory and grateful. Had many exciting things planned to celebrate turning 50. 

January - went to MX for Widespread Panic. Little did I know this would be my only live music of 2025....

February - March - Celebrated 4 years cancer free in Saguaro National Park. Went to a training camp in Arizona, and had a bike wreck. Broke my jaw, 4 teeth, and my wrist. Bruised the hell out of my chest. 

Surgery #1 to reduce and stabilize mandible. Jaw wired shut for 7 weeks. Ate liquid food through a silicone straw. Hardware put in to fix the wrist (surgery #2). 

April - Cancelled our 50th Birthday Dive trip to the Maldives. We'd planned this for 2 years. 9 days on a liveaboard with our favorite dive instructor. Crushed. 

May - wrist hardware ruptured my EPL tendon, and I can no longer extend or give a thumbs up with my right (dominant) hand. Emergent surgery to remove hardware.(#3 so far this year for those counting at home.)  

June - cancelled Boulder 70.3 ironman - was supposed to be aiming for a world champ slot, instead spent my year one handed eating through a straw. Probably the worst shape I've been in since my 30's. 

Aug - Decide to postpone getting my thumb fixed until AFTER our next adventure to raft the CO river in October. Turned 50. Lamest birthday ever. Feeling so Gen X right now. 

Sept 1 - freak accident tripping over a four year old, and dislocated my shoulder. In my kitchen. And put it back in myself. It re-dislocated that night while I was asleep, and a few weeks later doing simple yoga. Also put it back in myself x2 more because, you know, ER docs don't really go to the ER. Apparently. 

Sept 14 - after a precipitous decline and still unclear etiology, my father in law moves in with us on hospice and passes away one week later. There is turmoil amongst the family and now trying to support my poor husband through this. 

Oct 2 - Instead of bucket list trip to CO river, which would have been heading out this morning, cancelled yet ANOTHER life long dream trip because rafting with an unstable shoulder would be dumb. And today I head back to the OR for surgery #4 this year to get my shoulder repaired/stabilized so it hopefully doesn't fall out again. 

And in the midst of all this, Breast Cancer Awareness month comes charging in, making itself and it's pink awareness ever present in every news feed, social media, local press, and just fucking everywhere. It is exhausting. I've written in earlier posts about being thoughtful when donating to breast cancer related causes, and how important it is to vet charities and organizations selling pink stuff. If you want to support real meaningful research, I would suggest a donation to the Sikora lab at CU Anschutz, as they are studying HR+ breast cancer, ILC in particular, and they aren't trying to sell you anything (though you will get a cool tote bag if you donate, and it says you support lobular research, which your donation very much does). 

https://www.sikoralab.com/donate

If you're in the area, we'll be hosting a global ILC awareness day at CU anschutz on 10/15, and we'll be advocating for resumption of funding for cancer research, learning about the latest in Sikora lab research, and I'll personally be trying to find a positive nugget of good news for breast cancer patients. 

Cancer is exhausting - emotionally. Financially. Interpersonally and within a community. And it never ends. With my kind of cancer, I'm just "no evidence of disease" until at least 2041, not "cancer free". My stupid tumor biology has mastered the art of senescence and dormancy, and likes to pop up sometimes decades later. So I'm never free of cancer, in my mind, maybe in my body, and I can't really feel relief for another 15 or so years. I'm going to spend this October trying to reclaim my mind and body from breast cancer, instead of leaning all in to the awareness. Think before you Pink. 

Goodbye, Verzenio and Goodbye, Instagram

 May 22, 2025 - today was supposed to be my last day of Verzenio (abemaciclib), completion of a two year course of a CDK4/6 inhibitor to crush any remnant cancer cells into apoptosis (cell death) and with them, any chance of recurrence. 

I didn't make it the full two years - I had to stop 2 months ago because I was in a bike wreck, fractured my jaw and wrist, and given its effects on immune function and healing, we decided to just stop the Verzenio early. In the two months I've been off it, a few things have changed:

*I no longer need to take pills twice a day, which I never quite realized was such a giant pain in the ass until I had to do it. I can throw that AM/PM pill dispenser away!

*I no longer need to get my labs checked every freaking 90 days, to make sure the pills aren't wrecking my white blood cells/kidneys/liver etc. - I can go back to normal person lab tests: when I need them. I'm grateful I never really had any bad side effects, and that with my white blood cells hovering in the low to scary low range, I somehow did not get any major infections. Wearing a mask 100% of the time at work probably helped. 

*My hair is growing back! 8 months into Verzenio, the combo of the drug + menopause + endocrine blocker started causing major hair thinning. I'm grateful I had a thick curly head of unruly gray hair to start with, because I don't think it was super obvious to anyone but me, but godDAMN did my hair start to fall out. Tears were shed along with strands. Investments were made in shampoos, oils, tinctures, and prayers to the Hair goddess - please don't let me end up looking like Larry David (a comedian whom I adore - but whose hair I do not, and my unruly gray curls were headed in that direction...). 2 months off Verzenio however and it is starting to feel like my regular hair - and for this I am incredibly grateful. 

*Pharmaceuticals are stupid expensive, and I hope I never have to take another drug so expensive that it requires signature for a FedEx delivery. I'm grateful ironically to Eli Lilly, because their Lilly Cares program paid for a lot of this drug, and I am thankful to have been on the front line of cutting edge cancer drugs, but there has to be a more reasonable way to price drugs. 

*The early breast cancer CDK4/6 inhibitor trials (NATALEE, MonarchE) have shown some impressive results in preventing local, regional or distant breast cancer recurrence, and though they were not blinded and have some drawbacks, the data was convincing enough and my cancer was high-ish risk enough to give it a go. I'm glad I did - as someone who didn't have chemo or radiation, there'll always be a lingering doubt if I did "everything I could" to prevent it from coming back. 

So, goodbye Verzenio, let's hope you have the desired outcome of crushing cancer. And with this post, goodbye as well to @tracycrushescancer on IG. I've had enough of the metaverse, the broligarchy, the continuous flood of garbage I don't want to see whenever I open a social media app. I'm slowly and steadily deleting and decreasing my online footprint (as much as anyone can, anyway) and regaining my positivity, energy, and focus on much more important things like growing clematis jackmanii on my porch, snuggling with my dogs, and laughing with my husband. 

This isn't the end of the tracycrushescancer journey - it will just be limited to the blog, which I invite you to follow if you are so inclined. For the breast cancer advocates, warriors, patients, providers and friends I've made through this platform, I am so grateful we crossed life paths, and hopefully some of you will find me in real life or in other forums. Strength, love, and light to all my fellow breasties - I will miss you. 

MonarchE & NATALEE trial refs:

1. S.R.D. Johnston, M. Toi, J. O’Shaughnessy, et al.

   Abemaciclib plus endocrine therapy for hormone receptor-positive, HER2-negative, node-positive, high-risk early breast cancer (monarchE): results from a preplanned interim analysis of a randomised, open-label, phase 3 trial
   Lancet Oncol, 24 (1) (2023), pp. 77-90
2. 
   
   Lipatov Oleg Slamon Dennis, Nowecki Zbigniew, et al.

   Ribociclib plus endocrine therapy in early breast cancer
   N Engl J Med, 390 (12) (2024), pp. 1080-1091
3. 
   
   P. Rastogi, J. O’Shaughnessy, M. Martin

   Adjuvant Abemaciclib Plus Endocrine Therapy for Hormone Receptor–Positive, Human Epidermal Growth Factor Receptor 2–Negative, High-Risk Early Breast Cancer: Results From a Preplanned monarchE Overall Survival Interim Analysis, Including 5-Year Efficacy Outcomes
   JCO (2024)

4 Year Cancerversary

 

4 years in cancer land, and as of March 1, 2025, cancer free for 4 years. This year's national park celebration was in Saguaro Nat Park in AZ. I'm feeling some heaviness this year, as women I have come to know through my advocacy succumb to this awful disease, and feeling defeated that at 4 years, the reality is my risk of recurrence hasn't even BEGUN to recede and in fact, is only increasing. 

For most cancers, 5 years cancer free is a sigh of relief, a light at the end of the tunnel, and a time when their cancer becomes much less likely to recur. Not so for hormone positive breast cancer - indeed the risk of recurrence seems to peak between years 10 and 15, and for my subtype lobular, between 15-20. That means I'll be in my sixties and still worrying about recurrence more than ten years from now. It means that this may very well come back and kill me before something else has a chance to. 

The world is entering a dark time, and my own existence in it seems increasingly meaningless. I fear for science, for public health, for National Parks and public federal lands, for anyone not a straight, White male. I am trying to find the energy to fight, while resisting the urge to recede from this nonsense as far as I possibly can while being earthbound. I remain grateful for my oncologist, my cancer drugs, my husband, and for having made it this far. I am struggling with menopause, my body's decline, loss of members in my cancer community, and finding purpose. Then again, these seem like tiny concerns given what's going on overall, and I'm trying to remind myself of the bigger picture. Wishing you all peace and some serenity in the storm. 

January 27, 2021 - Four Years in Cancerland

 January 27, 2021 - a day like any other day. A wednesday. There was snow. I still had the steri-strips over my biopsy site, where they had punctured my lump a few days earlier. Four years ago today, I got the call. The call that no one ever wants to get. 

"It IS cancer"

Once you hear those words, you are inducted into Cancerland, and your life is never the same. You might have a break or a reprieve, but you are always a resident of Cancerland. Whether your treatment is ongoing, active, in remission, or constantly changing - you live in cancer land. 

When you think about retirement, life expectancy, the things you'd hoped to do with your life before you "couldn't" - you are seeing through the lens of cancer. It is never NOT a part of you. You may be able to shove it in a corner, put a lid on it, keep it from overtaking your life. You might even go a whole day or week without thinking about cancer. But you will always be a resident of cancer land. 

When you have hormone positive breast cancer, 4 years is almost nothing to celebrate: my insidious rude cancer doesn't come back right away. In fact, it RARELY recurs within the first 5 years - even though the party line is that being cancer free for 5 years is almost like you never had cancer....except when your cancer is slow growing, dormant, hiding, and likes to show up DECADES later, as my cancer does. So really, I wasn't expecting it to come back so soon, and even though I'm glad it hasn't, I know the first 5 years isn't the time I need to worry about - it's years 5 through 20. Yep, I'm a year away from STARTING the clock to recurrence countdown. Just when most people can breathe a sigh of relief and start to look forward, I will be ever looking backwards for that bastard to return. 

In the meantime, life in cancerland has given me lots to consider, in how I want to live, how I want to be in the world, what my priorities are, and what just isn't worth the emotion or energy. I've made some incredible friends, entered a world of research and advocacy, and pivoted from emergency to lifestyle and integrative medicine. 

Today, on my 4 year cancer-versary, I am starting an integrative medicine fellowship at the University of Arizona. I am embarking on a new path to helping cancer patients through integrative and complementary therapies, and continuing my lifelong education (it seems I just can't get enough school...). Looking back, I'm not glad I got that call 4 years ago, but I am grateful 4 years later to have had the opportunity to reassess what's important to me in life, and to always remember how grateful I am for every single day I have. 

Fuck you, cancer. I'm not living fully in cancerland anymore, but will always have one foot in the door. 

My Prenuvo Whole Body MRI Experience

 

  Prenuvo MRI - made popular by some influencers, and of questionable use for general public cancer screening. To understand how something becomes a cost-effective and clinically useful screening tool, we'd need an entire post and an understanding of epidemiology and health care financing - none of which I plan to discuss here. This isn't a post about whether or not this technology should be in wide use as a screening tool - it's one lobular breast cancer patient's experience so take it for what it's worth. 

Background: extremely dense breasts + lobular cancer = my mammograms x5 COMPLETELY missed my 3.6 cm breast cancer tumor. Thankfully my boobs were small and my lump was big, so I felt it. Was easily seen on ultrasound, and on Breast MRI. If only I'd known 10 years ago that dense breasts = higher risk for cancer + need additional screening, I might've gotten a breast MRI that would have easily shown my tumor. But I did not, and ended up Stage 2b instead of 1 because those stupidly false negative mammograms made me not get my lump checked out. 

This experience obviously influenced my opinion about screening, and imaging, and the longer you live with invasive lobular carcinoma, the more likely you are to have acquaintances and friends with the disease in whom conventional imaging has failed. I know of several cases where elevated tumor markers and circulating tumor DNA indicated there was a recurrence - but CTs and PET scans (even the estrogen tracer PET) could not find the lobular cancer. MRI did almost instantly. In fact, in the research/clinical ILC group in Belgium, this is their first line radiology test to evaluate for distant spread after early ILC diagnosis - straight to diffusion weighted water based MRI. No CT, no PET, no bone scan, no contrast, no dye, no radiation. 

For 4 years, I've lived under the assumption that I probably have cancer hiding somewhere, I just can't see it. This is the completely paranoid, scared, cynical me that knows the stats and the outcomes and is terrified of dying from cancer. Even with normal CTs and a normal (non estrogen) PET, I did not believe it. So when I learned about this test, I decided to go for it. 

The scans are available in several major metro areas around the USA, my closest in Denver. If you are healthy, you can just book a scan yourself. If you have a diagnosis of cancer within 5 years, you are required to go through a clinical review process that frankly was reassuring since I got to specify exactly what kind of cancer I had, and exactly where I wanted them to look for recurrence. 

The actual scan was fine - around 50 min for whole body + brain + spine. I watched netflix and chilled. No IV, no contrast, no needles. The results took about 2 weeks (because of the holidays) and I was emailed that my report was up. 

Then the freakout began. I was too afraid to look at the results. I was terrified that my biggest fear would be uncovered and they'd have found lobular cancer lurking somewhere. This was the only moment I regretted getting the scan. It took me a few hours, but I finally decided to open the report. 

It is an incredibly detailed report - to quote my oncologist, "I feel like I just examined your entire body in 5mm slices!" I opted for the whole body/brain/spine, and it noted every prior injury, herniated disc, arthritis, and all of the myriad things that are happening in this 50 year old menopausal body. What it didn't find, though, is breast cancer. 

For the first time in 4 years, I could take a really deep breath, and feel reassured that for the time being, I might have a normal life expectancy. I might die of something besides cancer. I had the first night of truly deep restful sleep I've had in 4 years. 

I had a list of "To Do"s and immediate triggers for my life that would've been in place should the results have been different. I'm a planner, a type A personality, and a "get your shit in order before it hits the fan" kind of gal. I've been planning for my death since the second I was diagnosed - and though I have no regrets about organizing my will, my estate, my clutter, and my digital footprint, I can now take a break in that planning and go for the "there's no cancer found" list of triggers: signing up for another 1/2 Ironman, setting some strength and physical goals, planning on a Grand Canyon Rim to Rim to Rim. Planning to turn 50 this year cancer free. 

I've spent far too much energy and time spiraling down the rabbit hole of cancer recurrence, and I'm so relieved to stop, just for a little while. Our family has a theme every year, and 2025 is our year of Celebration - we are celebrating life, love, family, friends, turning 50, and the many things we have to be fortunate and grateful for. It feels a little more like a celebration after this news, and it was worth every single penny. 

Here's to a 2025 Celebration! 

National Care Giver's Month

November is #nationalcaregiversmonth - behind every #cancerpatient is an invisible team of support, care, friendship and love. Cancer will bring some people closer, and it will push others away. You know who your "people" are when you're diagnosed with cancer. Some people I thought were in my corner simply abandoned me, and others I hadn’t connected with in years came thankfully roaring back into my life. 

This is my person - in life, in love, in romance, in friendship, in laughter and in all things. Brian, you never asked to get on the Cancer Train, but you jumped on with me and are still along for this crazy ride. I love and appreciate you and know I'd never have made it this far without your caregiving. 
Give a big hug to your cancer person this month! 

#fuckcancer #fuckbreastcancer #cancercaregiver#cancersupport #cancerfamily #besthusbandever #notalone
#proudflattie #flatandfabulous #noboobsnoproblem#flatvocate #hugacaregiver

@julielivermorephotography
@ariannafloral

Aromatase Inhibitors, the "Hormone Blocker": 3 years on....

In my patient support groups and online social breast cancer circles, I read many comments a day asking about whom has chosen to take these, who chose to forgo them, and how patients are considering "quality of life" over these drugs. I have now been on letrozole (Femara) 2.5 mg per day for three years and three months. I don't think I've missed a single dose. I don't like anything about the drug or its side effects, and there are many. But I like the idea of dying from cancer even less - so I take it every day, and I'm hoping someone reading this post will decide to stick with it too. 

I'm in no way suggesting these are easy drugs to take, or that the total and complete cessation of estrogen is easy to tolerate. When natural menopause occurs, there is still some circulating estrogen from adipose (fat) tissue to help ease the effects on bones, joints, and nerves. With aromatase inhibitors, it's next level estrogen deprivation, to the points of complete absence, and that's what causes worse "menopause" than the natural - the arthritis, the crippling joint pains, the vaginal dryness and pelvic symptoms - all are worse than they might  have been if we had been allowed to naturally progress to menopause. So yes, it's worse. 

And yes, these side effects are real. They cause decreased quality of life, pain, and it's understandable why women question taking them. So if you are early in your journey, and considering whether to take AI's, here are a few reasons you might want to: 

1. Not everyone has side effects, and if they do, sometimes they are better with time. Try the drugs for a few weeks, and see how you do. Don't anticipate you will automatically have every side effect you've read or heard about. Furthermore, there are three different AIs to choose from - if one is intolerable, take a break then try the next one. Many patients report different side effects from the three, so it's worth trying a second or third drug if the first one is intolerable. 

2. Many side effects are manageable - the arthritis and joint pain are truly manageable with movement, heat, and anti-inflammatories. If I skip yoga or my tart cherry supplements, my arthritis is immediately worse. But exercise every single day, sauna sessions, hot showers, and tart cherry supplements really do help. The pelvic symptoms can be mitigated with suppositories, lubricants, and PT. Yes, there are risks of osteopenia, osteoporosis, and exacerbation of high cholesterol and cardiovascular disease. And some of these do require more drugs to treat (I've done the zometa infusions, and now am on prolia for osteoporosis). No one wants to take more drugs to treat side effects of other drugs - but no one wants to die of cancer either. And the drugs for stage IV cancer have a whole lot more potential badness than many of these. 

3. It won't last forever - yes, it'll stink, and it might be 5 years, or even up to 10. Currently there seems to be no benefit for most patients past 7 years, and many of the side effects will improve once the medication stops. Some won't because menopause is forever, but the drug itself won't be forever. 

4. Because you don't want to die of cancer. My own personal choices on this journey have been made by that overarching goal: I want to die of NOT cancer. I will read literature, evaluate data, and look at studies - and as long as there's evidence that something will decrease my risk of cancer recurrence, I will do it. Maybe because I was 45 at diagnosis, I'm looking at things with a longer lens than someone diagnosed at 70, for whom a good 5 years now is worth 20 more years of life later - and that's OK. But the younger you are at diagnosis, the longer you will live under the specter of recurrence - and maybe the more likely you are to do everything. Not since tamoxifen has there been a major breakthrough in hormone positive early stage breast cancer until aromatase inhibitors. They remain the best tools in the toolbox for post menopausal women with HR+ breast cancer - and for lobular breast cancer, they've shown some benefit over tamoxifen for recurrence prevention. This is the best we have - and I never wanted to look back and wish I could've done something more in the face of recurrent or metastatic breast cancer. 

Below are a few of the studies showing the survival and recurrence data of these drugs if you want to read some data for yourself - but I encourage you to read the science, not the stories, and to see for yourself how you do before you decide not to pursue treatment with these drugs. 

1) Early Breast Cancer Trialists' Collaborative Group (EBCTCG). Aromatase inhibitors versus tamoxifen in early breast cancer: patient-level meta-analysis of the randomised trials. Lancet. 2015 Oct 3;386(10001):1341-1352. doi: 10.1016/S0140-6736(15)61074-1. Epub 2015 Jul 23. PMID: 26211827.

2) D'Onofrio R, Omarini C, Toss A, Sperduti I, Piacentini F, Barbolini M, Cortesi L, Barbieri E, Pettorelli E, Chiavelli C, Dominici M, Moscetti L. Adjuvant Endocrine Therapy in Premenopausal Women With Hormone Receptor-Positive Early-Stage Breast Cancer: Risk Stratification in a Real-World Setting. Clin Breast Cancer. 2023 Oct;23(7):712-720.e3. doi: 10.1016/j.clbc.2023.06.013. Epub 2023 Jul 7. PMID: 37507257.

3) Mamguem Kamga A, Billa O, Ladoire S, Poillot ML, Jolimoy G, Roignot P, Coutant C, Desmoulins I, Maynadie M, Dabakuyo-Yonli TS. Trends in endocrine therapy prescription and survival in patients with non-metastatic hormone receptor positive breast cancer treated with endocrine therapy: A population based-study. Breast. 2021 Oct;59:79-86. doi: 10.1016/j.breast.2021.06.003. Epub 2021 Jun 11. PMID: 34174766; PMCID: PMC8242053.

Sex After Cancer? It ain't the same....

As more and more patients survive early stage cancer, we increase the number of people facing the aftermath and long term effects of treatment. For some, it's organ damage from chemo, burns from radiation, hair loss, neuropathy - so many things to manage. For young women with hormone positive breast cancer, the fallout of early menopause can be devastating and difficult to live with. 

When I started this journey, I just wanted the cancer OUT and I wanted to LIVE. Once the terror began to wear off, I continued to make decisions based on wanting to live as long as I can, and to hopefully die from not-cancer. I begged to get my ovaries removed to starve my cancer - and only then did I realize the other parts of my body that would also starve. My bones, my brain, my cardiovascular system are all at risk and/or suffering - but holy moly the changes to my lady bits are next level. 

I've blogged before about the lack of data, info, and teaching about menopause to doctors, the lack of effective treatments other than hormones, the afterthought of older women. I appreciate so much that my oncologist and gynecologist sat me down and gave me the honest truth: my body, and my sex life, would never be the same. Starving your pelvic organs of estrogen results in all kinds of horrors - incontinence, dryness, painful intercourse, UTIs - and changes your intimacy with your partner. It's really important for partners (men especially) to understand what's happening biologically, so it doesn't disintegrate your relationship emotionally. Not wanting to have sex because it's painful is different than your partner thinking you're just not interested. 

The use of hormone replacement therapy is a god send to many menopausal women, but its use in women with a history of hormone positive cancer remains controversial. Newer data suggests the risks of cancer might have been overestimated, and that topical estrogen can be used safely in this population - but it's really scary for a cancer patient to hear "We have to remove all of your hormones to fight your cancer" and at the same time "we have some hormones to help the symptoms of your cancer induced menopause". Personally I have decided the risk is too great, and I would not risk cancer recurrence by using hormones. So I'm becoming an expert in the non-hormonal things we can do. A few things I've learned about sex after menopause: 

1. Use it or lose it. This is true. Vaginal atrophy begins with estrogen deprivation, and if you don't use those muscles, they can atrophy to the point of making any penetration (sex, pelvic exams, pap smears) incredibly painful. If you don't have a partner to use it, consider vaginal dilators. 20 min/day will keep those muscles active and healthy. 

2. Dryness and Pain - this affects you inside and out, thus should be treated both ways. I adore the Foria line of products for this (www.foriawellness.com) especially the Vibrance products that are made ESPECIALLY for this population. The Everyday Vulva Moisturizer and the CBD suppositories are a game changer (and their body wash is amazing for dry skin too). I recommend the suppositories 20-30 min before intimacy. Use code TCUSHING20 for 20% off their entire line - you will not regret it!

3. Incontinence/UTIs - this hasn't been my particular issue, but I hear about it all the time. Pelvic floor physical therapy is used often to help with strengthening the muscles and increasing control. Emptying your bladder fully and often can help prevent UTIs. 

4. Libido and Orgasms - unfortunately, these suffer from a loss of hormones too. My libido tanked, and even my orgasms seemed to be diminished in intensity, frequency, and achievability. The intimacy of sex brings partners together and keeps them there - so you have to figure out a way to maintain intimacy, even if you don't feel like having sex, or it takes you twice as long to have an orgasm that's 50% less intense. 

    TALK TO YOUR PARTNER. Maybe intimacy looks like hand holding, 20 second hugs at random during the day, kissing, or oral sex. It doesn't have to be penetrative vaginal intercourse - but if that was the definition of your previous intimacy, you might need to adjust that and find new ways to be intimate with your partner. You might need to rediscover oral sex, vibrators, or scheduled intimacy like date nights, in order to overcome the declining libido. Open and honest communication is paramount to navigating these changes as a couple, or for dating after cancer. I am beyond grateful to have a partner that not only heard those conversations with my providers, but was willing to make changes and work around my limitations to continue our emotional and physical intimacy. It looks different than it did before, but it is possible to maintain closeness and sexuality after cancer with a little effort and a lot of conversations. 

To my incredible husband Brian - I can't thank you enough for supporting my decision to forgo reconstruction, to remove my ovaries, to do whatever I can to prevent cancer recurrence. Our intimacy looks different now, but we are as close as we have ever been, menopause and cancer be damned. 

There can be sex after cancer - even good sex. Don't give up if it's important to your relationship and your self esteem. It might be different, but it can still be great.