It's official: Osteoporosis

 

Today’s adventure in breast cancer imaging: a DEXA scan. Basically a fancy X-ray of my lumbar spine, hips, and femurs. 

Scores of -1 to -2.5 mean osteopenia; scores > 2.5 mean osteoporosis. My scores are in green - and I have osteoporosis. 

I kind of anticipated this, even though I’ve been religiously taking calcium, vitamin D, and exercising. And now that I know, I’m devastated. 

The one steady light in my life this past year has been training and exercising - and now apparently a yoga twist could fracture my spine, and too much running might fracture my femurs. The cruelty of breast cancer is that it just keeps taking things away, slowly and painfully, one by one. 

3 more years of bisphosphenate infusions might stave off further bone loss, but this likely isn’t reversible and probably won’t get better. It’s hard to process. Right now I’m sad, angry, and scared. 

Two 1/2 Ironmans on the schedule in the next 2 weeks - and I’m terrified to run, train, or fall. I’ll have to dig deep to find some mental strength to get through these races, and I will have to let go of how angry I am that this is the wreckage left behind by breast cancer. 

I’m not sure what my triathlon future will look like after these races - or even if I’ll continue my daily, desperately needed yoga. It’s too much to contemplate right now. So instead I’m going to Utah to compete in the Ironman 70.3 World Championships this week, knowing it will probably be my last one. 

#fuckbreastcancer #fuckmenopause #lobularbreastcancer#breastcancerwarrior #aromataseinhibitor#estrogenreceptorpositive #osteoporosis #dexascan#triathletewithcancer #zometa

Birthdays, Milestones, and Meanings

Today I had an MRI of my brain. I’ve been having some weird hand and foot weakness so into the scanner I went to rule out metastatic disease. 

Cancer changes your outlook, perspective, and tolerance for other stuff: there were many sinister things that could’ve showed up on here - multiple sclerosis, strokes, vascular disease. I was ready and prepared for them all. Just. Not. Cancer. 

Friday was my first birthday AC (after cancer). Numbers and milestones have a new meaning now - I didn’t think at age 46 I’d be facing 15 years of fear of recurrence, 15 years of feeling unsafe and insecure in my body, 15 years that might be the last 15 I have. But I realized I’ve also done some cool stuff in these 46 years, and goddamn it, I’m not waiting around anymore for my bucket list adventures. I’m going to make them happen. 

This MRI gives me peace and relief - every single time I’ve gotten in the pool or a lake since my diagnosis, I’ve thought “What if I have brain metastases? What if I drown from a seizure?” (This is what happens when you’re a physician, and you’ve researched and written extensively about drowning.) Today I can breathe a sigh of relief that I’m cleared to swim, that I do not have brain metastases, and that one more scanxiety day has passed. Now onto planning some life adventures for the year ahead. 

Outdoor Divas Triathlon

Sometimes I think these posts about triathlons should go on my regular Instagram feed, because they have nothing to do with breast cancer.

Except they have everything to do with breast cancer now.

Everything I do now carries the mark of breast cancer: the scars on my chest, the lack of ovaries within, the drugs with debilitating side effects. 

It’s for this reason I want every breast cancer patient to know there are women out there fighting this disease, doing what they love, and feeling safe and whole in their bodies again. Even with the scars. 

I had so much fun today @withoutlimitsco #outdoordivastriathlon! Came home with some second place hardware (glassware), and never for a moment forgot how fortunate I am to be out there racing, exercising, and feeling strong.

#biscaycoaching #teamsfq2021 #smashfestqueen#vegantriathlete #tailwindtrailblazer #tailwindnutrition#fuckbreastcancer #fuckmenopause

3 month oncology follow up

 

3 month follow up appointment with my medical oncologist. I’ll do this every three months for 2 years, then every 6 months for a while, then every year. Someday it might even be longer than that. 

I was in tears in the waiting room for no good reason (there was a wait, I was impatient) and I almost left without being seen. I’m glad I didn’t. 

There’s a plan, a follow up trajectory, an understanding of the utility of labs and imaging in my near and far future. 

Living with a fear of recurrence is my burden now, but at least I feel cared for and monitored. Labs every 6 months, CT chest/abd/pelvis every 6-12 months (to follow some liver lesions that are likely nothing), DEXA scan every year. 

I’m terrified of stress fractures from osteoporosis, but I keep running. I’m paranoid about seizures from brain metastases, but I keep swimming. I just can’t let breast cancer take anything else away from me. So I go about my business, trying to shut those scenarios out, and telling breast cancer “You might win someday, but today is not that day.” 

Stay tuned for scanxiety and lab-anxiety days ahead. Thankful for a medical oncologist that listens to me and watches over me like a mother hen. 

#fuckbreastcancer #lobularbreastcancer#doublemastectomywithoutreconstruction#surgicalmenopause #breastcancersurvivor#breastcancerfighter #doctorsarepatientstoo#doctorwithcancer

Boulder 1/2 Ironman - 5 years later

5 months post double mastectomy, 4 months into surgical menopause, on medication that causes osteoporosis. 

I still managed to finish the Ironman Boulder 70.3 within 2 minutes of my 2019 time. Before breast cancer and all it’s associated bullshit. 

This was the first 70.3 I ever did, in 2016, and I got hooked on triathlon. In January 2021, newly diagnosed with breast cancer, I didn’t know if I’d ever be at the starting line again. 

I feel so fortunate to have raced today, and did so for every woman who has been on this crappy journey. I also raced for my health, firmly believing that exercise is the key to cancer recurrence prevention. I raced because I can. And that feels damn lucky.

#fuckbreastcancer #mastectomyrecovery#doublemastectomywithoutreconstruction#lobularbreastcancer #menopausefitness 
#flatandfabulous #noboobsnoproblem

F*CK you, Breast Cancer

 This is how I say f*ck you to breast cancer - with a first place AG win at BBSC Sprint Tri Boulder today. 

Even more special, I met a woman named Mary with a lymphedema sleeve on at the swim start - and like a badge of honor, she wore it proudly. There are a lot of survivors out there, and every time I meet one doing what I love, it brings joy to my heart and hope to my soul. 

Thank you @biscaycoaching and @lesliemillertri for coaching me and believing in me. Thank you @beewood17 for supporting me in all these shenanigans. Breast cancer and menopause, you can both suck it. 

#smashfestqueen #teamsfq2021 #lobularbreastcancer#doublemastectomywithoutreconstruction #fuckbreastcancer#fuckmenopause #menopausefitness #breastcancerwarrior#triathletewithcancer #tailwindtrailblazer #tailwindnutrition#flatandfabulous #noboobsnoproblem

Hit by a Truck - also known as Zometa

I’ve heard the first Zometa infusion is the worst - and gosh, I hope that’s true. I spent all of yesterday in a fetal position, crying in bed, with fevers, chills, and unrelenting bone pain. 

I spent a lot of yesterday feeling sorry for myself, that this is my life, that I have three more years ahead of these infusions and 7 more years on my aromatase inhibitor. That this isn’t going to get “better”, even if my cancer doesn’t come back. 

It was a low point on this journey for sure. 

Today I woke up feeling human and grateful not to be in pain - so I went to the pool and swam 3200 m. Because I have a race this Saturday, and I’m not letting breast cancer mess with that. It felt like heaven to move in the water, without my bones and joints aching. 

Then I attended the research and advocacy committee meeting of the Lobular Breast Cancer Alliance. I decided I might as well use my clinical training to advocate for research on the disease that’s wrecking my life, and I’m honored they’ve accepted me onto their Board of Directors. Sometimes it’s useful to be a doctor and a patient. 

I’m hoping to use that platform to spread the word about lobular breast cancer, that it’s different than ductal, that it’s frustrating there are few studies done on preventing recurrence, and that the surveillance for ILC is unique. 

Zometa sucks, breast cancer sucks, and menopause sucks. Advocacy and speaking up do not. 

#zometainfusion #lobularbreastcancer#lobularbreastcanceralliance#doublemastectomywithoutreconstruction#noboobsnoproblem #smashfestqueen #biscaycoaching#breastcancerwarrior #breastcancerawarness

First Zoledronic Acid Infusion - here's to bone health!

 

Today’s post-shift cancer adventure: a trip to the infusion center for Zometa (zoledronic acid). 

This drug is in a class called bisphosphenates, that are used to regulate calcium, and in my case to stave off osteoporosis for as long as possible by keeping calcium in my bones. There are some studies suggesting it prevents bone metastasis from breast cancer too. 

The infusion center was calm, well run, and enormous. It made me sad to see chair after chair set up and ready to administer medications, chemicals, and poisons in the name of curing disease. I had a comfy chair, a nice view, and a caring RN named Lisa. I showed up with blood drawn and IV in place thanks to @shannon_bueno 

During the infusion, a volunteer named Sarah performed Reiki on me for a few minutes, and it was really lovely. She is a 3x cancer survivor (breast x2), and it was so moving to have her lay her hands on me. 

I’ve read some descriptions of this infusion as being “worse than chemo”, “like being hit by a truck”, or “the worst flu ever”. So far, I’m just tired after working two shifts, but we’ll see how the next few days go. I'm still racing a triathlon next weekend, so fingers crossed it isn't that bad. 

#lobularbreastcancer #fuckbreastcancer #zometainfusion#doublemastectomy #fuckmenopause#osteoporosisprevention #herewego

Let’s talk about menopause. Again.

I posted about this a few months ago, before my ovaries were removed, before my estrogen was blocked, before I knew what I know now. 

I’ve loved @drjengunter since she first started busting Goop myths and garbage sold to women looking for relief. I read this book hopeful that I would own my health and feel empowered to crush menopause. 

It was quite the opposite - I spent several days in tears, mourning my estrogen and the benefits it provides, growing ever more fearful of cardiovascular disease and osteoporosis. As a hormone positive breast cancer survivor, I can’t take the hormone replacement therapy (HRT) that would make me feel better. 

Don’t get me wrong - this book is a great read. But three months into menopause and I can honestly say I’m not crushing it, it is not graceful, and it totally fucking sucks. I thought hot flushes and night sweats were a mere annoyance - then I learned they’re associated with heart attacks and cardiovascular disease. I thought calcium, vitamin D, and strength training would prevent osteoporosis, weakness, and falls - instead I learned that even doing all the right things, I might end up with a stress fracture or lower bone density. 

It is disheartening at best, downright depressing at worst, to feel your body disintegrate at the age of 45, to watch the efforts of training and discipline fall apart, to know that even if cancer doesn’t kill me, full on menopause has lowered my life expectancy anyway. Since my aromatase inhibitor might increase my cholesterol, I can add heart attacks and stress fractures to the ever growing list of things that might kill me well before I hit my 60’s. Thanks, breast cancer.

There are simply no good solutions for women who can’t take HRT - I should be the poster woman for health in menopause (thin, exercise a lot, taking all the vitamins for bone health, acupuncture, massage, cognitive therapy) but instead I’m suffering, and basically will have to suck it up, buttercup. The mental weight of this is so much heavier than a double mastectomy was. I miss my ovaries. 

#fuckmenopause #fuckbreastcancer #lobularbreastcancer#hormonepositivebreastcancer

Healing Through Triathlon

Today was all about showing up, seeing what I could do, and racing against myself. New body, new challenges.

Seven years ago I signed up for a triathlon just to see what the local fuss was all about - the Boulder Peak olympic tri. I had no idea what I was doing, I could barely ride a bike, and my first open water swim practice ended in a panic attack. 

Seven years later, I showed up to the same starting line with so much gratitude just to be there. Today I had a personal best Olympic swim, crushed the Olde stage climb, and ugly cried on the run - because I’m alive and moving and outside with the people I love. And that is all I need. 

#fuckbreastcancer #triathletewithcancer #fuckmenopause#smashfestqueen #teamsfq #biscaycoaching#tailwindtrailblazer #gotailwind #noboobsnoproblem#doilookflatinthis #doublemastectomy #flatandfabulous

Feel it on the First!

It’s the first of July, so here’s your monthly reminder to #feelitonthefirst 

Everyone should be doing breast self exams, but especially ladies with dense tissue, please get to know your lumps and bumps.

I knew as soon as I felt the little BB sized mass that 
A) it hadn’t been there before
B) it felt different than the rest of my “lumps”
C) I needed to get it checked out right away. 

I had a normal mammogram that completely missed my 3.4 cm tumor - finding that lump definitely found my cancer, and might have saved my life.

Please get to know your breasts. That way you’ll know when something changes. A few helpful tips for self exam in the photos. 

#feelitonthefirst #fuckbreastcancer #lobularbreastcancer#breastselfexam #breastcancerwarrior #breastcancerfighter#gettoknowyourbreasts