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

Invasive Lobular Carcinoma - The Stepchild of Breast Cancers

 It's never fun to be in the "other", "rarer", "more aggressive" category of breast cancers - that is, lobular breast cancer, the kind I have. It represents around 15% of breast cancers, but is often overlooked in its unique features that require different tools for diagnosis, treatment, and surveillance. 

The Lobular Breast Cancer Alliance's mission is to bring attention to LBC as a distinct disease, and to guide more research efforts towards its specific pathology. Here's a link to a short video that explains what we do and why we're doing it. Please consider supporting LBCAs mission. 

https://bit.ly/3sg6YoY

#ihavelobularbreastcancer #lobularbreastcancer#lobularbreastcanceralliance #lobularbreastcancerawareness#breastcancerawareness #breastcancersurvivor#estrogenreceptorpositive

More Imaging, More Waiting, More Hoping for Anything But Cancer

 

Another spin through the magnet - this time a full spine MRI that took 90 minutes. I understand now why people freak out on the table and refuse scans - it’s really claustrophobic, hot, and painful to lie motionless on your back for that long. 

Another scanxiety, another reckoning with what ifs and please don’t let it be THAT. Compression fractures, pinched nerves, osteoporosis, herniated discs - bring it on.

Just. Not. Cancer. I desperately want to make it to March 1 cancer free - exactly one year having no evidence of disease. One year isn’t a long time, and my shitty cancer hides and comes back a lot later, so this isn’t much of an anniversary, but goddamn it one year cancer free is one year cancer fucking free. 

Time to hydrate the gadolinium out of my kidneys!

#lobularbreastcancer #ihavelobularbreastcancer#estrogenreceptorpositive #scanxeity #mri #fuckbreastcancer#fuckcancer #breastcancersurvivor #breastcancerwarrior#triathletewithcancer #doctorsarepatientstoo

Writing Through Cancer. And PET scans.

 

One in 8 women will be diagnosed with breast cancer in the US, and even though we're a large group, every one of us has a different story and a unique path. 

I had the privilege of talking about my journey with @wildfire_bc_magazine 's amazing founder @i_heart_my_lifeon #theburnpodcast - April's literary magazine helps young women with breast cancer write their stories. 

Ironically, as I publish a link to my episode that focused on exercise and triathlon in my journey, I am in a forced sedentary position for 24 hours before a PET scan today. What next level hell is this when the pre-procedure instructions say Do Not Exercise? 

My piece was in the Body edition of Wildfire - and my body has changed in so many ways it's hard to process, thanks to a diagnosis of breast cancer at age 45. My mind has, too. The regimen and training of triathlon have kept that body functioning and moving forward. It has also kept me sane - hence my irritation over being told not to exercise. 

PET-CT today, and more scanxiety. A good day to re-listen to this podcast and remind myself what I've been through so far. 

#writingthroughcancer #lobularbreastcancer#estrogenreceptorpositive#doublemastectomywithoutreconstruction#triathletewithcancer #scanxiety #flatandfabulous#noboobsnoproblem

1 year Cancerversary

 

One year ago today was the last time I woke up without cancer on my mind. It was the last time I had a normal life expectancy, the illusion of unlimited time, a completely different view of the universe. 

One year ago today, around 3:05 pm, I got the call. "It IS cancer." And just like that, my life would never be the same. 

Dante's Divine Comedy has always been one of my favorite books. I now feel like I'm living in Purgatory - Paradise was life before cancer, when I had breasts and ovaries, when I didn't have osteoporosis or early menopause. That world is gone. 

Should the worst happen, should I become the 1 in 3 women that progress to metastatic breast cancer, I will be firmly in the Inferno, planning for my imminent demise (within a very short time). 

Now, I live in the middle - in Purgatory. Never going back to Paradise, never without the shadow of breast cancer looming. But I live not sure whether to plan for a retirement I might never see, and trying to balance every moment I spend with the urge not to waste a single one. It is an uncomfortable place to live. 

One year in, I am glad to be alive. I am thankful that my body is still mostly functional, even if a little more frail, a little more painful, and a lot older. I can now go at least a few hours every day without thinking about breast cancer. Living in Purgatory is a really shitty place to be, but I'll take it for as long as I can stay. 

#lobularbreastcancer #invasivelobularcarcinoma#doublemastectomywithoutreconstruction #fuckbreastcancer#fuckmenopause #cancerversary #estrogenreceptorpositive#iliveinpurgatory

So. Many. Pills.

The type A personality in me loves the organization of this weekly ritual, and the pretty rainbow. 

The doctor and patient in me are sad and disgusted that this is what my life has turned into in the past year - too many pill bottles to deal with every day, too many side effects of my aromatase inhibitor and menopause to count. 

Well, at least it looks nice, and I never forget to take my pills. 

#fuckbreastcancer #fuckmenopause #fuckosteoporosis#estrogenreceptorpositive #aromataseinhibitor#lobularbreastcancer #breastcancersurvivor#doublemastectomywithoutreconstruction#youngwithbreastcancer #atleastimorganized#somanyfuckingpills

Zoledronic Acid #2

Night shift to infusion center: Zometa number 2 of 6. Treating osteoporosis and preventing bone metastases. 

Healthcare was a dysfunctional industry before COVID - now it is downright broken. Being a patient is a dehumanizing, frustrating experience and with burnt out, disinterested, exhausted staff, it’s even worse. 

I wanted to try a slower infusion this time to avoid the “I got hit by a truck” side effects I had with the last one, but after a long night and a ridiculous pharmacy wait, I was tired and angry and I told the nurse to just run it in. I will probably regret that when my bones are in agony tomorrow, but for today, I just had to get the fuck out of there.

I love my night shifters, my RNs and techs and social workers, and all of the people that are still showing up and doing their jobs after 2 years of frontline hell. But our system is broken, and our workers are too. Being a patient right now is truly scary, disorienting, and hard. So is being a healthcare worker. 

So if you know a first responder or healthcare worker, please give them a hug and thank them for their service - because we have been on the frontlines of the Covid battle and we are tired, we are frustrated, we are angry, and we are looking for reasons not to give up. 

#fuckbreastcancer #fuckcovid19 #lobularbreastcancer#estrogenreceptorpositive #zometa #osteoporosis#fuckmenopause #doublemastectomywithoutreconstruction#flattiesunite #noboobsnoproblem #healthcareworkers#doctorsarepatientstoo

2021 in Medals and Numbers

314,504 y (205 miles) of swimming
517 miles of running
3057 miles of biking

3 sprint triathlons, 1 Olympic, 3 70.3s including back to back week races, and a 5k.

All of that with a month off for a double mastectomy, a second laparoscopic abdominal surgery, surgical menopause, and some crappy medications. Wow. 

This past year was definitely the worst of my life so far. Exercise, training, and setting and smashing goals were the physical glue that held me together. To even make it to the starting line of a race held me together mentally. 

One year ago January, breast cancer stormed into my life. My oncologist told me the best thing I could do to prevent it from coming back was to exercise. Mission accomplished. From pre-surgical strength training to post operative daily walking and PT, I haven’t given up on this body yet. 

Loads of thanks to @biscaycoaching @lesliemillertri who supported me during this journey, and to @withoutlimitsco@bbsctri @ironmantri @shestronginc for giving me the opportunity to recover through racing. 

@beewood17 none of this would be possible without you. Thank you for your patience, care, generosity, thoughtfulness, and most of all your love. Here’s to setting and smashing more goals this year!

#teamsfq #teamvpa #teamshestrong #smashfestqueen#quintanarootri #brooksrunning #truetreadmill #pickybars#tailwindtrailblazer #breastcancerwarrior #fuckbreastcancer#lobularbreastcancer #triathletewithcancer#breastcancerrecovery#doublemastectomywithoutreconstruction#noboobsnoproblem #setgoalssmashgoals #swimbikerun#gratitude #gratefultriathlete