One Woman Many Lakes

What to do when you receive the death sentence of a diagnosis? Metastatic breast cancer kills 113 of us every day. How was I going to wrap my head around this disease and get through the next day…and the day after that…and the day after that.

Swimming became my refuge and my salvation. I had been doing sprint triathlons for 24 years when this diagnosis stepped up to try to stop me in my tracks. It has been two years since receiving this gut wrenching diagnosis but I have discovered I could take control of my life by rising up and literally jumping in the water.

It all began while sitting in my oncologist’s office hearing the treatment options and what may lie ahead for me when I asked him if I could still do the 2 1/2 mile swim that I had been training for which was scheduled right after finishing radiation. His response was, “Of course”. Two months later I was in Seattle in the water of Lake Washington swimming as if my life depended on it. It was empowering to conquer this lake and as I came ashore I felt that combining swimming and spreading the word about this disease was now my mission in life.


Fast forward from that day to a beautiful sunny March afternoon in Arizona’s Lake Patagonia with a 56 degree water temperature when I plunged into the water while my husband and dog followed me in a rowboat. We had our homemade sign stating the need for more funding for MBC and how to help. It was a lonely swim with few people on shore but one man stopped me as I exited the water and asked what I was doing. I explained my mission and he said, “I’ll write a check”. That was the beginning of One Woman Many Lakes and the plan to raise funds and spread awareness through swimming became a reality.


Since that first swim and nine months later, I have jumped into twenty-three bodies of water across the country and even took a plunge in Antarctica. People have responded with their pocketbooks and have helped spread the word on this disease but, of course, it is not enough. The young and old are still dying—I know I must continue swimming and advocating until a cure is found.

Now a new year is here and it is time to get in the water again but this time with a twist. The idea began when I read about Lesley Glenn of Chino Hills, California, a hiker who hasn’t let her disease slow her down. She and I connected and began brainstorming about doing a triathlon to highlight the fact that even though MBC is part of our lives now, it will not deter us from doing what we love. We put the word out about someone joining us to do the third leg of the tri and Leslie Falduto from Texas responded that she was a runner and would love to join in.

Now we have a team, a date and a goal—go nationwide and get anyone who has breast cancer, anyone who knows someone with breast cancer or concerned people who want this disease eliminated forever to join in and blast the airways.

On June 28th we want everyone across the country to get involved in doing something physical that day—anything from running to yoga to taking a walk—just get active. Let’s show the world that we are moving, thriving and want to stay this way but need research to keep us going.

Go to www.onewomanmanylakes.org and join our team to stay informed. Click on the advocate button that will provide you with an easy way to send an automated email to major cancer organizations requesting more funding. You will also find out how you and your friends and family can virtually join us on June 28th. Print out a bib, wear it as you do your activity and post it on social media using the hashtag #tri4mbc.

Research is our best hope and if the world starts shouting with us we will have more time being active, loving life and being there for our loved ones—and after all, that’s what matters the most.

Will this keep Jennie alive?

Will this keep Jennie alive?

Last year, I met an amazing woman named Jennie Grimes through Living Beyond Breast Cancer's Hear My Voice program. Jennie sat next to me in our first session of training and I was immediately impressed. And hearing her story, of an initial cancer diagnosis at 27, of a metastatic diagnosis at 29, of (at that time) almost 5 years of metastatic treatments, of losing her chance at being a mom because treatment stole her fertility...well, that's when a switch went off in my head.

I'd lived with my metastatic cancer for a year at that point, and I'd reached the anger stage of my anticipatory grieving process. I was angry that there weren't better treatments. I was angry at the lack of research dollars flowing to metastatic disease, which accounts for virtually all of breast cancer deaths and 90% of cancer deaths across organ of origin. I was angry about not getting to see my kids grow up, because median survival with metastatic breast cancer is only 33 months.

But after meeting Jennie, I knew what to do with that anger. I was going to channel it into doing what needed to be done to keep Jennie alive. I was going to demand that more research dollars go towards metastatic disease, and I was going to do it through direct action. Little did I know that Jennie felt the same way about me--and that's how MET UP was born, an organization committed to changing the landscape of metastatic cancer through direct action.

Since MET UP began, we've staged 6 die-ins across the country, met with Congressional staffers, testified before legislatures, held signs at scientific meetings, and kept up an endless social media campaign outing groups whose work will not save Jennie's life, or the lives of the other 250,000 Jennies living with metastatic breast cancer in the US, or the lives of the countless others living with MBC across the globe. And we've partnered with other groups, like Tigerlily, who understand that our cause is righteous, that our anger is understandable, and that our work is important.

But in cancer land, there can be a lot of egos, and agendas, and distractions from what really matters: keeping the Jennies alive. It's easy to go off course and end up mired in the weeds of the political intrigues in cancer land. There are so many fundraisers that don't contribute to research. There's so much research that doesn't contribute to saving lives. And there's so much posturing between cancer advocacy organizations about who gets what piece of the pie. And none of that is productive at all.

So, we've begun to ask ourselves a question every time we need to make a decision: will this help keep Jennie alive? If the answer is "yes", then we're all in. If the answer is "no", then we stand in opposition because it's a distraction from what really matters. We protest because it's how we get the attention of the decision-makers who are ignorant of, or who have ignored, our plight. We meet with political leaders to beg for our lives. We connect with researchers, and connect researchers to each other, to move the science forward.

All of this, we do because new and better treatments are the only things that will save Jennie's life, that will save the lives of all the Jennies of this world. This is the thing that drives us every day, in everything we do. It's what keeps me going in the face of hostility and belittling from legacy breast cancer groups--that what I'm doing can help keep Jennie alive.

The brutal truth of our movement is that neither Jennie nor I will see its final success, because this will be the work of years, and the odds are that neither of us have those years. But the harder we work, the faster we can change the landscape for metastatic cancer, the more Jennies will be spared from the death that Jennie and I will face.

The amazing Shannon Curtis wrote a song for our movement, and my favorite line from the song is "I am determined to save your life." That's what MET UP is about, and our movement won't stop until metastatic cancer is no longer a death sentence.

Grateful Friends

“Fearless Friends” is an emerging phrase in the breast cancer world. A Fearless Friend is someone who has early stage cancer or no cancer at all, yet advocates for and supports those with terminal cancer. A Fearless Friend may be someone who steps up to be a caregiver; they may be someone who researches metastatic breast cancer; they may be someone who does online work to educate; they may be the person who sits and really listens to a terminal friend, looks them in the eyes knowing their lives are mostly over and asks: “What can I do for you?” Fearless Friend is meant as a term of endearment. It’s meant to acknowledge that it is scary to be around people with a terminal disease. But it is also a misnomer; if we were really fearless, our acts and our friendship wouldn’t be so significant. The truth is, I am scared every fucking day, but that fear compels me to act rather than turn a blind eye.

If you aren't scared, you can't be brave. Metastatic advocacy work is brave for anyone doing it. It takes courage, and that's why it touches people. We are sad all the time, and we are not alone in this. I join a vast network of people, both metastatic and otherwise who refuse to let their fear draw them into complacency. The online world of folks living with or advocating around MBC is very interconnected. With 113 people dying in the US every day, it is common to know someone who will die on any given day, even if we only knew them online. I read messages and posts from friends who are terminal. I see that they are grieving lost friends too. What title do terminal patients get when their friends are also terminal? Are they Fearless Friends as well?

As impacted as I am by these deaths, I know that my emotional impact is so very different from my terminal friends. I have the freedom to walk away. At least, in theory I do. I can choose to not attend conferences about MBC. I can choose to not get close to people with the disease. My involvement is entirely chosen, whereas for someone with MBC there is no turning away. Metastatic patients lose friends who can’t bear closeness to death. They don’t have a choice about keeping those friends. Even I have alienated many friends by talking about cancer all the time. While I know that I do have a choice to not make this disease such a large part of my life, it doesn’t really feel that way.

It is my distinct honor to stand up for these people; to be let into their lives, know their hopes and fears, and watch their outrage become action. For as long as I can stand I will stand with and for them; for as long as I have my voice, I will join my voice with theirs. While this seems to be a choice I need you to hear me when I say that it is not. It is NOT A CHOICE. I am simply not capable of knowing the injustices that lead to so many deaths due to MBC and doing nothing. I am not capable of knowing these friends so intimately and turning my back on them out of fear. They don’t turn their back on me out of fear of my life. My energy and health are not insults to them, they are attributes.

The term "Grateful Friend" is much more appropriate. We enter into these friendships knowing what's at stake, but still grateful to have that friendship and all its potential for as long as we can experience it. If we were indeed fearless, these friendships wouldn't be so impactful. We love people in part because of this fear, including it, not despite it.

When someone opens up and lets me into the bloom spaces of their raw emotion - fears and joys and all – I can only be filled with a distinct gratitude at being trusted to hold that space. It takes bravery to open up in such a way, so we are none of us fearless. We are all filled with fear like a fever, and for those who use that fear as fuel we should all be grateful. If we can focus on gratitude rather than fear, we will find ourselves infused with the bravery to carry on.

Here I am, ever your Grateful Friend,

Vonn Jensen

 Photo credit:

The single shots from a shoot in Italy 

with Alessandra Pace and Fausto Serafini. 

The last picture is of Cougar Perry and Emily

Jensen as shot by Ames Bex Productions

Sour Fruit

Have you ever admired something only to find out that it all reality it was broken inside? I can remember admiring my neighbors fancy brand new car, with its physical allure. My admiration was misleading, as I found out later on that it was a "lemon" meaning it came from the factory with malfunctions. This vehicle gave my neighbors trouble after only a few months of purchasing it. Even through all of the troubles they were receiving from their lemon, they still had hope that it would get better in time. Living with Metastatic Breast Cancer, I often feel like a lemon; vibrant and seemingly fine on the outside but like I have gone sour within.

While my son was in elementary school, I was working evenings. I was able to take him to school each morning and occasionally on "special" mornings, we would stop on the way in and grab McDonald's breakfast. One morning, my son was taking a sip of his Mc D's orange juice and he looked at me crying that "it didn't taste good". First, I felt the orange juice to make sure it was cold. This particular morning, it was very cold. Continuing my investigation, I took a sip of the cold orange juice, to have my breathe taken away by the sour juice that flowed into my mouth. The juice was so old and soured that I gagged, over and over. It looked perfectly refreshing and healthy through the bottle but its insides were just the opposite of how it appeared.

My neighbor brings "the grass is greener on the other side" saying to life, often complimenting me on my bright, healthy, green, grass. I simply smile, knowing how my husband struggles to fertilize and maintain the appearance of the yard while keeping it alive. My husband sees the grass loosing it color as it dies and fades to brown in new areas often and we water and tend to the grass to bring it back to life as another area begins to die. That's how I feel with my fight for a healthy, vibrant life, while living with MBC. Even with my treatment plan, the cancer continues to spread to other parts of my body. It has spread to the lymph nodes in my neck, chest wall and pelvic area.

There are countless amounts of women who are struggling to keep their vibrancy, health, and liveliness as they battle day to day living with MBC. They may have times where they appear vibrant, healthy and lively but inward their body is fighting a war against itself, ravaging the woman along its path.