Travel, advocacy, gardening, & Roe (in that order)

In the past four months I am so grateful, so lucky to have had a couple stable scans. I've made it fourteen months on this treatment, so for once I'm on the right side of the curve, in this case the Kaplan-Meier curve. PFS is progression free survival- how long a person stayed on this drug regimen without having cancer growth. The authors also looked at overall survival (OS) but that's another story. If you're interested, the paper can be found here.

 In the meantime, I've been living my life to the best of my ability- traveling, getting more involved in advocacy, learning more, and growing things. I've struggled a little bit with random fatigue and joint pain (who isn't?) and am recovering from COVID, but other than that I'm in good shape right now! 

 Travel

In March I traveled to New Orleans with two good friends and had a blast. The food was fantastic - grilled oysters were my favorite (Acme was good, Felix's was better), but also the etoufee and pizza we had after wondering the French Quarter (you can speculate as to why that was lol). 

I had a couple lovely morning walks through the quarter down to the river and because we arrived on Ash Wednesday, I also scored a bunch of free Mardi Gras masks from a coffee shop.

 And yes! We drank cafe au lait (yumm) and ate beignets. New Orleans coffee is the first I've ever had that was improved with cream and sugar. 

I definitely recommend a ghost tour! We did ours in the middle of the day, which was actually great because you could see all the buildings and not get too freaked out. I appreciated the ability to have a G&T on the tour as well lol 

We wandered the French Quarter one night and had Sazeracs at Hermes bar (apparently if you walk in like you own the place and aren't too drunk they let you into the "closed" bar). We had the same at the pirate bar near St. Louis cathedral and watched a guy on Bourbon Street wipe the floor with a couple young med who thought they were all that and a bag of chips (hint: they were not, at least not at chess). I saw & heard jazz in the street and at Two Sisters.

Of course I had to drag Mel out to get some nature (kidding, she was willing!) and we saw alligators, birds, and lots of swamp err.. forested wetland :-)

With Joan of Arc :-)

 

In April I tagged along on a work trip with Will to Charlotte, NC. Fatigue got me there for a day but got a nice hike in south of town. And on the way back an amazing hike on the Appalachian Trail. I confessed to Will that I had a love affair with the Smoky Mountains, and we are still married. Phew.  We saw beautiful spring flowers and received a short flower ID tutorial from a couple taking photos. I could hike that trail everyday. 

 

 

 

 

 

 

Advocacy & Travel 

At the end of May I traveled to Washington DC to learn more about breast cancer advocacy and the National Breast Cancer Coalition. I learned a lot about the history of the NBCC and the fire that drives their advocacy, much of it rooted in the 1960s and modeled on AIDS advocacy. I learned from fellow advocates, scientists and legislative aids. 

The talks on disparities were amazing for the passion with which people spoke on the research and the day to day practice of treatment AND what we can do. Shout out to Drs. Fumiko Chino, Melissa Davis & Naomi Ko. A good example and one that hit home was disparities in clinical research. The OncoDX test (a gene expression test on the tumor) was one that my surgeon used to determine that my cancer was aggressive enough that chemotherapy would likely benefit my long term survival. But the major studies on that test were almost entirely done on white women. And studies are showing that different suites of genes drive aggressiveness in breast cancer in black women. Financial toxicity and stress were also discussed- I'm sure no one is surprised that these lead to worse outcomes (increased morbidity & mortality). 

On the last day we went to the Hill and met with legislative aids to our Senators here in Ohio (Sen. Brown & Portman) and a state representative. I learned a ton from the fabulous Amy Fogel who led those meetings- the entire Ohio delegation was made up of Amys- as we channeled the NBCC "be bold" model. The following week we met on Zoom with more Congressional Representative, including our own. By the time we hit our 4th that week we were on a roll.

I used to think politics was a dirty word...but politics is power, and that's how we can help more people. Or...science is necessary but not sufficient. 

I also gave a talk at UD's Relay for Life in early April. I had to write it out even if I didn't read it (mostly lol). That was amazing for my family and friends coming out to support me and the amazing students who organized an event that raised thousands of dollars for research and support of cancer patients. They are a great group.

Gardening

I've also been growing things! The natives I planted in the fall are doing well as are the berries we planted. We have strawberries! This is at once awesome but also...I feel like mid-May in Ohio is early for that? The weather's been so hot I wouldn't be surprised. But I digress! Will put up a fence around the garden so now we can have lettuce, and I can enjoy the bunnies in the backyard without wanting to murder them for eating my plants. So that's nice. I've expanded to peas, beets, and carrots, which are entirely new to me from a growing standpoint, so we'll see how that goes. I'm really enjoying lunch salads right now though.  And yes, I started all my veggie plants from seed...which is really to say back in late February through April. My point is...planting and growing are hopeful acts and I love them. 

Lastly...abortion

I was in DC when the SCOTUS leak occurred. We were right next door on Tuesday, and I spent time at the protest. I also was lucky to meet and spend time with a new friend- Kellee. We chatted for an hour or so on the lawn and were interviewed for a story. It's weird...we kept running into each other at the  conference and then when we were leaving for the protest and just ended up talking on the lawn while she waited for her ride. On a funny note- while we were in the crowd a photographer said she was interviewing people who had fought for Roe the first time...awkward silence and then "uhm, we're not old enough for that" lol poor photographer. She was young and when I ran into her again she apologized and we chatted. 

Personally, I'm mad as hell and heart broken for all the pain and suffering that people will endure due to this ruling. Choices have to be made in life. And no one in this country of life, liberty, and the pursuit of happiness should be forced to risk theirs for another. Legally, no one can force you to even give blood to save a life...how can we reconcile that with forcing someone to undergo much greater risk of morbidity, mortality, financial, psychological, and social loss, to carry an embryo/fetus to term and give birth? Even if you firmly believe that an embryo or fetus is a full human being, that does not mean it should have more rights than another person; it does not mean its life should weigh more than the person carrying it, which is exactly what banning abortion would mean. 

Fin. For now.