A stage IV metastatic breast cancer (mBC) survivor with lymphedema, Jodi Beck is proof that a diagnosis doesn’t define you or limit what you can do. She recently traveled all of Route 66—donning her Juzo sleeve—living each mile to the fullest. Enjoy getting to know more about Jodi, how she’s navigating her health and her #poptartin trips to 22 states … and counting.
Tell us a little about yourself.
I am 54. I’m no longer able to work because of my medical condition, but before my diagnosis, I was a “Jodi of all trades”—designer, landscape, events. I live in California and love to travel, hike and country line dance as a way to work on my mental, physical and emotional healing … mBC and still me!
When were you diagnosed with mBC and what is your treatment plan?
About three years ago, I started my journey navigating the Spanish Dancer (stage IV breast cancer). In a nutshell, I was diagnosed HER2+ HOR – stage IV mBC. It had metastasized to 62 total spots in my body—bones, kidneys, lungs, lymph nodes, liver, left neck, bilateral axilla and upper abdomen—and three spots in my brain (yes, you read that correctly). I did 16 rounds of chemo, had two hits of gamma cyberknife radiation to my brain and a radical double mastectomy.
At this time, I am a miracle walking. I am NED (no evidence of disease). I call it being “stable,” (like a weeble wobble) and I am very, very grateful. I look good and feel good, but behind the scenes, it is still a constant battle to keep my spirits high as I continue to have infusions of immuno, targeted therapy every three weeks and a shot for my bones to navigate the stage IV breast cancer diagnosis. I also get scans every three months, along with a gauntlet of appointments, hopefully confirming there is no progression.
Read more about Jodi’s cancer diagnosis and treatment.
How did you learn you had lymphedema?
When I started chemo, I noticed that when I ate and walked, my arm got really swollen. It took me almost two months to get an appointment and by then it was almost 20% bigger than my other arm. This is when I began battling lymphedema, alongside stage IV breast cancer while managing this thing called life and the people that come along with a diagnosis like this.
What does your lymphedema management plan include?
The journey has been crazy. We managed to get swelling down a bit before I had a double mastectomy, which made my arm blow up again. I’ve had more than 100 physical therapy (PT) appointments and am still going weekly. During PT, I receive medical lymph massage and bandaging. Wearing my Juzo sleeve and glove is part of my daily routine, so I’m happy that it comes in a pretty blue. I have a black and nude set, as well, but of course they are not as fun as the blue one—the small glimmers. I have come to the realization that I will be in a sleeve for the rest of my life unless there is a miracle (I am definitely praying for this). This is that darn “new normal.”
Why did you decide travel Route 66?
Halfway through my chemo treatments I got into PT, and we started the process of trying to teach me how to manage this crazy side effect … of the side effect … of the side effect of cancer. I had a rash on both hands and my fingernails were separated from the beds, so my lymphatic system was on overdrive. Once I began wearing a wrap 24/7, my arm had got to 30% bigger than the other one. We could not get the fluid to budge because of what chemo was doing to my body. Then the kicker came. In the same sentence my oncologist said I was stable (great news), I found out that I would need infusions every three weeks "indefinitely." The same week, my physical therapist said the doctor ordered me not to go in a plane until I was “released.” I was devastated. While I am excited for the stable diagnosis, my life has changed forever.
I am a traveler, so my wheels starting turning on how I could continue without getting on a plane. My uncle and aunt had recently come from Oklahoma via route 66, so it got me thinking. Driving would put a lot of wear and tear on my car, so my friend suggested the train. That day changed my life and outlook forever. Since then, I have been on three major #poptartin trips on the quest to see the U.S. by train. In the middle of it, I added doing Route 66, which I just finished in April.
To keep me motivated and distracted from having lymphedema and navigating stage IV breast cancer, I want to see all the states via the train. I just finished my third trip. I saw nine states via seven train legs and some driving in 23 days. I was on the train for one of the legs for 46 hours. I love the train! All those years of project managing and building a business have paid off.
What has surprised you during your train travels?
I’ve had three major surprises. First is how great everyone was to let me stay with them. Out of 22 states, I have only stayed in four hotels. I am beyond grateful for all of the love and support. Second, I feel the most alive on the road/train/traveling! Third, the U.S. is amazing. Every state is so different. It is fascinating!
Why do you want to advocate for awareness of cancer, lymphedema and compression?
I feel strongly about telling my story for many reasons. I think I am good at it. I love taking pictures and writing about my journey. It is therapy, so why not share? I feel, to some degree, it is my job and a way to give back to everyone that has helped me.
What motivates you to persist, despite your health complications?
Travel. Travel. Travel. Line dancing. Hiking. Anything to take my mind off of it. With lymphedema, there are more limitations than you think. I cannot hold certain things. It is almost impossible to type while I am wrapped. The visible bandage wrapping and sleeve I wear 24/7 does not allow me to get away from cancer conversations. But, love heals! I am living proof.
If you are battling this crazy disease, reach out! Get into groups. Ask for help. Ask for prayers. You are not alone. If you are a caregiver or a friend helping someone through this, you are a wonderful human being. We need you, but it is so humbling to ask.
Where to next?
I think the Florida/Georgia area is next. Follow me on Instagram @jodienne or find me on Facebook (Jodi Beck) to see where I end up and view photos from my past trips.
We have a team of Juzo Champions that are advocates like Jodi for others battling conditions that require medical compression to help manage. Learn more about them on juzousa.com and connect with them on social!
Follow us on Instagram, @JuzoCompression and Facebook to keep up with Jodi and find inspiration from others.