Recovery Through Exercise

 First swim in 2 months since mastectomy/oophorectomy! This was humbling - so much fitness and range of motion lost. So much hard work wiped out by breast cancer.

It felt like I’d never swam before, like my body didn’t know what do to in the water, and like the scars were going to rip open my chest. 

I’ll figure out my new normal and exercise tolerance in the next few months, but today was a reality check that I won’t just be hopping back into the pool or on my bike - my mind will need to be patient with my body.

Breast Self Exams - Do Them!

Today’s topic: breast self exams (BSE). I recently came across this little teaching model someone gave me in medical school: it gave me a tactile memory of what a bad lump feels like. I never forgot. 

19 years later, when I felt my own lump, it almost made me vomit - I knew the second my fingers rolled over the hard knot that it hadn’t been there before, and that it wasn’t good. Sure enough, it was breast cancer. 

There are some conflicting statistics and articles about the utility of BSE in breast cancer prevention. Most people don’t argue about the utility of mammography, but I’m an example of where routine screening utterly failed. 

I had really dense breasts, and a lobular cell tumor - a set up for missing the cancer that was likely there for years before I felt it. I religiously got a mammogram every year. It did nothing to detect my cancer earlier, or to save my life. My BSE, however, did. 

I wouldn’t say I’ve been diligent about doing BSE, but I was comfortable enough with my own breasts to recognize something new, and that’s really all you need. Get to know your breasts, examine them, feel every lump and bump. Even with dense tissue, I could still feel my lump. 

Don’t get me wrong - get your mammograms too (and colonoscopies, cholesterol screenings, and BP checks). But don’t let that be the end of your breast cancer prevention - get to know your breasts. 

I wish I could get every woman one of these models, because knowing what a tumor feels like isn’t knowledge only a doctor should have - it should be something every woman knows, so she knows when to be concerned. If you feel something, say something. 

Let's Talk about Scanxiety

 Let’s talk about “scanxiety” - the anxious fear many cancer patients have when it comes time for scans. 

Scans come in many varieties (ultrasound, CT, MRI, bone, PET) but the bottom line is they’re looking for what we all fear most: metastatic cancer. Some look for shrinking tumors in the setting of chemotherapy, others screen for the presence of disease that may or may not be symptomatic. But every cancer patient goes through the agony of scanxiety, and the life or death sentence that may come with it. 

Today is my turn: first scan since mastectomy and oophorectomy. Making sure what is most likely a benign finding on my liver from the last scan remains so, and making sure the dual traumas of surgery and stress haven’t given my cancer the opportunity to grow. 

You’re never cured of most cancers, you simply achieve a state called NED - “no evidence of disease”. It’s what every cancer patient hopes for after every scan. If there’s someone in your life who survived cancer, this is likely still a stressful anniversary no matter how remote their diagnosis. Give them a hug and send them good vibes - it helps. 

Let’s talk about Oncotype scores

The test evaluates 16 different genes in my tumor, and tells me how likely my cancer is to recur, on a scale of 0-100. It also quantifies the effect of chemotherapy on recurrence, if any. 

The test is fairly new, and applies only to hormone positive, Her2 negative breast cancers. It isn’t widely available outside of the US, and it is expensive. I’m fortunate to have this guide my therapy. 

My score is 19, putting me in the intermediate range of recurrence, with a 6% risk of distant recurrence (metastatic, stage IV cancer) in the next 9 years with endocrine therapy alone. 

The good news is chemotherapy only lowers that risk another 1.6% - not enough to justify the risks. So for now, I won’t have systemic/traditional chemotherapy - just endocrine therapy to block estrogen. It means I get to keep my hair (or at least what doesn’t fall out from menopause/estrogen blockers), and I get to keep my veins intact. 

A reassuring visit with the medical oncologist today put my mind at ease about not having chemo. It weighed on me that if I “do nothing” and my cancer comes back, I will always wonder “What if?”, and I will always have regrets. But chemo doesn’t work that way: it works on rapidly dividing cells, run amok and clinically evident - it doesn’t work on slow growing, non replicating, dormant cancer cells lurking in the depths of my body. So it wouldn’t help now, anyway. 

The countdown has started to 15 years - 180 months until I can breathe easily that my cancer is gone and not coming back. It is a long time. Maybe in a year or two, it won’t be the first thing I think of every day, or the last thing at night. With each passing day, I’m closer to a breast cancer free life. 

Let’s talk about mastectomy recovery

I opted not to have reconstruction, so came home without implants or expanders, just 2 drains. I started walking immediately, worked on range of motion right away to get my shoulders and arms moving, and started PT two weeks post op. 

Mastectomy physical therapy has been integral in my recovery- I see a PT who specializes in taking care of women like me. She works on my scars, my range of motion, and gives me exercises to do at home. It has sped up my functioning and decreased my pain - I am so thankful to be going every week. 

I’ve had to re-learn how to use my shoulders and arms to account for tight scars with less skin, how to move in space without breasts (it’s harder than you’d think after having them for 30+ years), and how to use exercise for rehabilitation instead of just plain fun. 

2 complications that can arise afterwards: cording and lymphedema. These happen if lymph nodes are removed, and even though I only had 7 taken, my left arm is clearly having issues rerouting my lymphatics so it gets swollen and firm - lymphedema. 

No one is sure exactly why it happens only sometimes, but it is not uncommon. Lots of conflicting data about having blood draws/BP checks, flying, saunas, compression - most women just deal with it. I’ve been wearing a compression sleeve that seems to help, as does manual lymphatic drainage (manually rerouting your own lymphatics to help your body figure out how to do it). It seems to be getting better. 

Cording is a different beast - thin tight bands of connective tissue or lymph tissue (again, no one really knows) that can form from the armpit to the wrist. You can literally pluck it like a guitar string, and holy hell they hurt. PT has taught me how to mobilize the tissue around the cords and to stretch them gently so they hurt less. I’m told they’ll go away eventually. I hope that is soon. 

Six weeks post op I can finally put my arms above my head without difficulty and take my shirts off without a second thought. It has taken a lot of work to get here, and I’m so grateful for all of the help. 

The Day My Ovaries Died

 Before breast cancer, Ironman Boulder 2018 was one of the biggest challenges I’d ever faced. I was so proud that I bought my first finisher jacket: it wasn’t the first Ironman I’d finished, but it was definitely the hardest, and it took me to places I’d never been, physically and mentally.

That jacket is now my talisman for each battle in the breast cancer fight. It reminds me that my mind can be fiercely strong, that I’m a fighter, and that I never, ever give up. So I wore it today, along with my F*ck Cancer socks from @chelseadymond - and I’m home recovering. 

Pictured, for the curious, in the next photo is one of my actual ovaries - the little beige lump. Doc said everything looked normal and healthy - just another sacrifice on the altar of breast cancer. They’ll send it for pathology just to be sure.

Now 2 long weeks of patience and more activity restrictions, just as I was finally getting some semblance of my life back. I’ll be walking today, and counting down the days until I can bike and swim again. 

Thank you all so much for the support and good vibes - I felt you with me today in spirit. I am so grateful for my love @beewood17 who takes care of my body, mind, and soul. Today I am thankful and ready for what lies ahead. 

Let's Talk About Menopause

 

Let’s talk about menopause. No one really does, in medical school, in life, in social circles. I vividly recall being educated during late childhood on my impending puberty, my fertility, and the changes I would go through. 

But no one really talks about menopause. It is the process through which our bodies stop having the ability to bear children, and stop making the hormones that allow it to happen. Women are thought to begin the process somewhere in their 40’s, and it might last for 5 to 10 years before the ovaries completely shut down. 

Some women weather the change gracefully, barely noticing. Others suffer myriad changes that affect daily life (sweating to the point of needing to change clothes is hard to manage with a day job), that affect sexuality (so many losses here, too many to count), that affect health (cardiovascular disease and osteoporosis increase in post menopausal women). 

Well, by this time tomorrow, I’ll be in menopause. I’m 45. I’ll never know what natural menopause would have been like, if I’d have had a graceful transition from childbearing to later stages of life, but for me there will be no such grace - it ends tomorrow. 

And that’s the point - the end of my ovaries means the end of hormones that can fuel my cancer, and that’s why I’ll get them removed tomorrow. 

Technically known as a laparoscopic bilateral salpingoophorectomy - they’ll remove the tubes and the ovaries through tiny incisions in my belly button and lower abdomen. I will be home recovering tomorrow afternoon - and have no idea how soon after the symptoms of menopause will begin. 

Thank you to @beewood17 and my beautiful daughter for another organ-inspired cake to commemorate the loss of yet another one of my organs. It feels like a lot more this time, because of what comes afterwards, but it is a small price to pay for years of disease free survival and life. 

My First 5K After Cancer

5 weeks ago, I had a double mastectomy. Today, I ran 5k. I’m not sure this smile captures the sheer joy I feel moving, or the first time I’ve felt like myself inside this body in five weeks. 

Today I had no distance or time goals, no expectations, and no idea what I could do, if anything. Today I felt the sun, took deep breaths, and ran. Today, I feel like I can crush cancer.