HEALING, SURVIVING & SUPPORTING
JuLY
JESSICA Oldwyn
1. Introduction - Who-are you, What-do you do, Where-do you live?
My name is Jessica Oldwyn, and I live in a seaside town north of Seattle. Just before I was diagnosed with brain cancer, ten years ago, I was looking into law school or a dual masters/PhD program. I was looking for a challenge. Little did I know that the challenge would ultimately be surviving cancer. Ironically, I had just created a blog to keep friends and family informed as I was to travel across several different countries in Europe. Of course, the blog morphed to cancer instead of travel, and the trip was cancelled, but the blog is still live, so it can be used as a resource for others. I rarely post these days, though.
2. What type of cancer and when were you diagnosed?
At the age of 29, on April 13th, 2010, I was diagnosed with an infiltrating Astrocytoma, a type of brain cancer. I have since undergone 4 brain surgeries.
3. Tell us a little about where you are on your Journey?
My oncologist wanted me to do a fifth brain surgery a few years ago, but it had only been six months since my previous surgery. I wasn’t ready. So after a deep reflection, I opted out of the surgery and the radiation/chemo that they were wanting me to complete. Instead, I tracked a drug, a new experimental drug for a different type of cancer, one that targets a mutation that I have. I kept reaching out to the drug company, even traveling to NYC to meet with the head neuro oncologist who works directly with the drug company in trials. I waited, and I actively tried to get this mutation blocker (for a lack of a better description), and finally, I was able to get it through the drug company. The reason why it’s such a miraculous story is because I have aged out of any clinical trials that utilized this drug. If you’re not familiar with that term, it means that I’ve lived too long to fit in the parameters of the clinical trial. They were only taking patients that had been alive with this diagnosis for 5 years max. I was essentially being punished for surviving. Getting the drug through the drug company was my only chance.
4. What does “Love Beats All” Mean to you?
Love Beats All means community, strength, support, out-of-the-box thinking about care and lifestyle. It’s all encompassing. It means joy through challenges.
5. How do you feel our generation of Fighters, Survivors and Caregivers are “Changing the Face of Cancer?”*
I am SO excited about the new crop of cancer patients. I wish they didn't get diagnosed, to go through the life altering changes, but I have immense hope with the tools that now exist. Cancer care is so much more than surgery, chemo, and radiation. It is no longer odd to adjust your diet, include treatments like acupuncture or meditation, or even use Qi Gong. I see more patients taking control of their health, and it’s inspiring!
6. What is some advice you would offer someone who is about to start their own cancer journey that you wish you would have known?
My husband Dan, my soulmate, my bashert. And also I just love being alive on Earth! Every little bit of it. To feel feelings, observe, interact, grow, learn, to feel the pain, the joy, and the sorrows.
7. What has made you the most happy or most supported when things get dark?
When I’m sad/scared I search YouTube for animal friend videos. I also google fluffy animals to get my endorphin fix. My guiltiest pleasure though, and I’ve never shared this with anyone but is that I love to picture alternative universes that might be going on simultaneously, that parallels our current lifetime. It’s a secret game that Dan and I play. Sometimes we have ten children, and we live on a farm, growing our own food. Or we’re goat herders living near a fjord in Norway. Sometimes we’re best animal friends. Recently, he was a bald eagle and I was a squirrel and he would take me flying. The only constant is that we’re always together sharing our lives.
8. What are the gifts and/or life lessons cancer has given you?
Breathe. Take time, right now, in this moment to start to reconnect your mind with your body. You are going to have to make a lot of hard decisions, and in order to do that you have to harness the power of your intuition. So start using that muscle. No one can do this for you, but you’re strong, and you’re capable.
9. What mission, motivation or information would you like to share with the Love Beats All community?
Always making my own decisions about my medical treatments. I have refused treatments/brain surgeries if it didn't feel right in my gut. I truly believe that timing is everything, and I have to feel confident about my choices. I never want to make rash decisions, or regret my actions. I need my life, my survival, to be my responsibility. The stakes are too high to blindly follow anyone, not even a doctor.
10. What are the gifts and/or life lessons cancer has given you?
I work hard to not compare myself to other people; their lives, their capabilities, their careers, their families, their medical security, their financial security. I am so deeply grateful to be here, to get to do the things like walk, or laugh, or cook a meal. I focus, not on what I can’t do or contribute, but instead of what I can create and do. My life is drastically slow, and that has become a blessing and a huge gift. After each brain surgery, I have to relearn how to walk, talk, read, write, use utensils, etc. And each time they cut into my brain I can’t recover to the same degree. I haven’t driven in years. I can’t cut my own food. I struggle understanding numbers, and letters which causes a lot of confusion with information. I struggle using a knife, or trimming my own nails, but I do my best and I’ll never stop trying. In the meantime, I focus on what I get to do. I get to breathe in this moment. I get to feel the sun on my face. The list is endless. This is not the life I imagined, but it’s the life that I feel grateful to get to live!
11. What mission, motivation or information would you like to share with the Love Beats All community?
There is no one perfect treatment, no one perfect way to eat, etc. You have to blaze your own trail, and it’s not easy. But once you surrender to that fact, you can start moving forward on your journey to heal. You are stronger than you think, but also, don’t be afraid to ask for help. Surround yourself with positive people that will support your journey. Don’t be afraid to reach out to doctors, or researchers, or others that can help you understand the cancer world. Ask a lot of questions, and don’t forget that your doctors are working for you. Whether you’re paying out of pocket, or through insurance, you are paying the bills. You deserve respect and to be heard.