Zometa #3

Zometa infusion #3 of 6 - probably a dumb idea to do this 9 days before an Ironman, but some things are more important than triathlon. 

Things like preventing bone metastases. Things like slowing the process of osteoporosis so that I don’t get a stress fracture running a marathon. The first infusion was a doozy; number two was less awful, but still felt like getting run over by a truck. Hoping some Tylenol, Allegra, and pre infusion hydration will help this one hurt less. 

Once again the fallout of breast cancer and the side effects of treatment are unavoidable and ever present, even in the midst of our upcoming Alaskan adventure chaos. 

First time at @rockymountaincancercenters for my infusion and so grateful to be here with pleasant nurses, a welcoming infusion center, and efficient staff. 

Thank you as always to @beewood17 for being by my side.

#fuckbreastcancer #ihavelobularbreastcancer#lobularbreastcancer #fuckmenopause#aromataseinhibitorsideeffects #fuckosteoporosis#triathletewithcancer #zoledronicacid #zometainfusion#metastasisprevention #rockymountaincancercenter

In Honor of Leigh Pate

 

Today I am devastated at the news that LBCA co-founder Leigh Pate has died. Without this fierce and tireless advocate, the organization I turned to in my most scared and vulnerable moments would not exist. 

Thank you so much for starting this Leigh - I know you personally helped so many women on this journey, and your advice about advocacy was invaluable to me. We will carry the torch in your honor from here. 

Please consider a donation to this wonderful organization in honor of Leigh. 

www.lobularbreastcanceralliance.org

#lobularbreastcanceralliance #lobularbreastcancer#breastcanceradvocacy
#fuckcancer #somanylost

National Cancer Survivors Day

 Holding space and love for all my fellow cancer survivors on this #nationalcancersurvivorday 

My oncologist told me one day I'd wake up and not think about breast cancer at all. I anxiously await that day, but only a year out, it still eludes me. In the meantime, I survive, and do my best to thrive. Sometimes I go hours without thinking about breast cancer, and I am so grateful for those times. 

Keep up the advocacy, awareness, and sharing the truth about cancer, wherever you are on your journey. 

#lobularbreastcancer #fuckbreastcancer#nationalcancersurvivorsday #breastcancersurvivor#breastcancerawareness#doublemastectomywithoutreconstruction #flatandfabulous#noboobsnoproblem #myboobstriedtokillme #cancersurvivor#triathletewithcancer #teamshestrong #fuckmenopause#estrogenreceptorpositive #ihavelobularbreastcancer#lobularneedsresearch

Officially a Lobular Breast Cancer Advocate; Sikora Lab @ CU

 

I think I can now officially call myself a lobular breast cancer advocate. 

With a generous micro-grant from BCCRF, we hosted a #lobularbreastcancer event at CU Anschutz yesterday, featuring a clinical oncologist and a basic science researcher focused on ILC. Some shocking stats here, including that ILC dedicated research accounts for 0.5% of all breast cancer research published each year, despite representing 10-15% of cases. We can do better. Thanks to researchers like Matt Sikora PhD, we will. You can check out his work at www.Sikoralab.com 

Thank you to BCCRF, #cucancercenter#lobularbreastcanceralliance and to all those who came in person to attend. 

YouTube link: https://youtu.be/ay8DTb_4h_k

#breastcanceradvocacy #ihavelobularbreastcancer#breastcancerresearch #invasivelobularcarcinoma#breastcancereducation

Advocating for Invasive Lobular Cancer Research

When you’re a physician with cancer, it’s hard to resist the urge to advocate for the forces of medicine to come together to cure your particular type of cancer. 

It feels good to advocate for better detection, better research, and better treatment for ILC. Thank you so much to BCCRF for the micro grant that is supporting my efforts, along with the Sikora Lab at CU Anschutz.

We are hosting an in person event on 6/1 at the CU Anschutz Campus on ILC, featuring patient experience, clinical treatments, and advances in basic science and research. It is the first of its kind in the Rocky Mountain region, and we are hoping to bring awareness and raise support for the researchers focused on this disease. 

@colorado.cancer @rockymountaincancercenters 

#lobularbreastcanceralliance #lobularbreastcancerawareness#ihavelobularbreastcancer #breastcanceradvocate#breastcanceradvocacy #doctorsarepatientstoo#breastcancersurvivor #dosomethingaboutitorshutup

3 Month Oncology Check Up

 

3 month follow up with medical oncology. 

Lovely to be chatting about life and the future, instead of worrying about scans and random pains. Tumor markers remain normal, no evidence of disease. 

First visit where my MD used the word "cured" with regards to my cancer. I am not sure I'll ever sit comfortably with that: last week I took care of a patient whose breast cancer came back thirty years after initial diagnosis - my living nightmare, and the fear that lingers in my soul every day. 

That patient told me she "never really thought about it" in those intervening years - and I was overwhelmed with jealousy and awe, that a human brain could be quiet like that. My mind knows no such quiet. 

Cured. At only one year out, with 4 more of endocrine blocking meds, and 14 more of surveillance for spread, it seems premature. At the same time, she knows her shit. If she thinks I'm cured, maybe I should just run with that. 

Another happy development: the explicit mention of flat closure after mastectomy in the new 2022 National Cancer Center Network guidelines. Believe it or not, this was absent until this year and largely due to the amazing work of @notputtingonashirt and other flat-advocates, it is now listed as the first surgical option. Strong work, #flatties 

@nationalcancercenternetwork

#fuckbreastcancer #lobularbreastcancer#ihavelobularbreastcancer #lobularbreastcanceralliance#lobularbreastcancerawareness#doublemastectomywithoutreconstruction#breastcancersurvivor #breastcancerawareness#nevertooyoungforbreastcancer #flatclosure#astheticflatclosure #flattiesunite #aromataseinhibitor#estrogenpositive #nocancerheretoday

One Year Ago - The Day the Letrozole Started

May 1, 2021 - the day I started letrozole. 

May 1, 2022 - the day low back pain almost made me cry in the pool. 

Menopause is no joke. Aromatase inhibitors are no joke. I’ve aged at least 15 years in the last 365 days. 

The slow and steady decline in my fitness, strength, and flexibility might not be inevitable if I had some estrogen left, or the ability to make any. But the scorched earth that remains of my endocrine system is entirely without it - and what remains is a fragile, decaying shell of what my body once was. 

Yet still, I swim. I ride my bike. I desperately cling to the rituals and hobbies that made me happy before all of this crap. 

I haven’t missed a single dose of the poison that is keeping my cancer at bay, but I hate it more and more each day. Four more years, or maybe six, or maybe nine - no one knows the magic treatment duration. Just that I should take it as long as I can tolerate it. 

One year done…

#fuckbreastcancer #lobularbreastcancer #aromataseinhibitor#breastcancer #surgicalmenopause #letrozole #ihatethisdrug#doublemastectomywithoutreconstruction

More Scans, and DNA Research from Dana Farber

A busy day in cancerland - a trip to Cherry Creek for an exam, a drive to Anschutz for an ultrasound, and a relieving radiology report. 

The new lump I have turns out to be a "calcified suture" but damn if that thing doesn't feel just like my tumor did. Like a BB. Like something that just shouldn't be there. But for now, another sigh of relief that the thing is not The Thing. 

In the name of science, I spit in a tube and sent my DNA - along with permission to obtain my medical records - to @countmein , a research endeavor from @danafarber that will track differences between my normal DNA, and my cancer DNA, to try to figure out how those cancer cells went rogue. 
Unlikely to make a difference in my personal treatment, but kudos to them for such an ambitious endeavor. If you are interested, you can get a kit for yourself at joincountmein.org - open to all cancers, not just breast. 

#scanxiety #lobularbreastcancer #ihavelobularbreastcancer#breastcancersurvivor #scarylump #ultrasoundday#itsnotcancer #fuckbreastcancer#doublemastectomywithoutreconstruction#breastcancerresearch #researchsaveslives #researchnerd#medicalresearch

One Year N.E.D. - I love Ned.

 

ONE YEAR N.E.D. (No Evidence of Disease)

One year ago today, I rolled into an operating room and had my breasts removed - and hopefully, all of my cancer with them. 

One year later, I can say I have No Evidence of Disease - recent scans look clear, no looming symptoms on the horizon to evaluate, no scary lumps or bumps to work up. No evidence of disease. 

The Sword of Damocles will hang over my head, at least until 2036, when I can breathe a sigh at 15 years that maybe, just maybe, that fucking cancer is gone and isn’t coming back. Until then, each day is a gift and a blessing not to be wasted. 

Celebrating today’s NED anniversary with my amazing husband @beewood17 and puppies in Grand Teton NP (ironically celebrating no longer having Grand Tetons) - snowshoeing, hiking, kissing, and laughing…as it should always be. 

This hasn’t been the easiest year, and certainly not the best, but I’ve learned so much about myself, my priorities, my circle of people, and how I want to be in the world. Thank you to everyone who has supported me so far. One year down, fourteen to go…

#ihavelobularbreastcancer #lobularbreastcancer #oneyearned#nocancerhere #doublemastectomywithoutreconstruction#noboobsnoproblem #flatandfabulous #fuckbreastcancer#grandtetonnationalpark #snowshoes #breastcancerrecovery#breastcancersurvivor #breastcancerwarrior