Living with cancer has given me the opportunity to spend more time reading for enjoyment. It is a welcomed escape. I recently read one of Brené Brown’s books, Braving the Wilderness. In today’s post, I explore this book’s themes from three different lenses.
This lens is a basic introduction to the book’s main message. Brené Brown explains that being brave involves being true to yourself. Being brave means bringing life to your story. You are the only one who can do it.
She says you aren’t going to please everyone. Inevitably, it means you can’t be brave and never disappoint anyone. So true.
If you seek the constant approval of others and people pleasing is more important than your own inner happiness, you are not being brave.
There will be criticism with braveness. There will be LOTS of criticism.
There will be great moments of uncertainty because you are standing alone.
There will be vulnerability as you discover all your truths and how you are discovering exactly how you belong.
These sound terrifying. Going through life not knowing yourself is more terrifying. Braving the wilderness means you stand firm when you face the wind and disapproval of others. When you know yourself, you have the courage to stand firm in your beliefs because you know who you are.
To truly belong, you only need to belong to yourself.
That’s the biggest take away for me in the whole book. In a world where belongingness is sought after in almost every interaction and relationship, we all lose sight that the most valuable relationship we have is the one we have with ourselves. The interactions that matter most are the ones directed at how we treat ourselves.
She writes that “true belonging doesn’t require you to change who you are, it requires you to be who you are.”
Belonging is intertwined with I AM.
My opinion and personal interpretation take over with this lens.
Having cancer is a wilderness of its own. Truly belonging to yourself and blending that wilderness with a cancer wilderness is challenging. To own both wildernesses is overwhelming.
I believe if Brené Brown were to speak directly to me, she would say to lean in fully to the loneliness and discomfort of cancer. She would emphasize the need to become vulnerable with it. The personal connection with it would change how I feel about it. At least I think that’s what she’d say.
I also think I’ve had plenty of loneliness, discomfort, and enough of a personal connection with cancer already.
Brené Brown writes a lot about boundaries. The firmer the boundaries, the more respected they will be. It is not okay to be taken advantage of and trampled upon physically or emotionally. You can’t belong to yourself if you are crushed.
Cancer can crush a person as much as someone else can. Being bald makes you look and feel less feminine. Surgeries do the same and you’re left feeling “less than.” Others often confirm it. If you are flat, then you somehow have lost your womanhood. Perceptions around going flat are slowly changing. Treatments take all the oomph out you so there isn’t much energy left for you to object to cancer defining you. Medical labels, side effects, perceptions, and an evolving normal keep shifting. It’s easy for cancer to define someone. It’s much harder to claim belongingness.
Suddenly, you are not you anymore, but the person with cancer. Everyone has a story to share with you because that’s how they attempt to connect with you and now identify with you. It’s important to set boundaries for how you want to be treated.
Firm boundaries support trust. When others respect boundaries, it is safer to trust them. Trust has caused me an ocean of hurt. A lot has become clearer to me in the last few years.
To me, living with cancer and learning to trust more means:
Strong boundaries enable a person to have more empathy for others. Self-care comes first. Then you know what you can do and not do for others. I still identify as a helper. Taking care of myself first lets me know what time and energy I have available for others.
Living well demands I brave it – it being life – and I’m braving it fiercely these days. The older I get, the more at home I feel in my own skin. I’ve known for some time that my happiness depends on my braving life. I am comfortable with most of the decisions I make. Being brave is both frightening and peaceful at the same time. The uncertainty and vulnerability show up as frightening, but then the acceptance of those parts of my life oddly brings an element of peace.
This sounds like an oxymoron if braving the wilderness involves only needing to belong to ourselves and having the courage to stand alone yet firmly in our beliefs and values. The way I see it, there is still room for the support of others who are also being brave. Picture a wilderness scene. I can be standing in my wilderness next to a beautiful mountain lake holding a sign that proclaims my beliefs. Another person can be standing a few feet away near a magnificent tree with a sign that reads entirely different. Part of my wilderness may be accepting and trusting others. This holds challenges for me, but I need to be vulnerable enough to slowly test those waters. The other person may be working on keeping a few more personal thoughts and the confidences of others private. We can give each other the acknowledging head nod to show our support while still recognizing the work is an individual inner process.
The other way I believe we can be brave together is that it’s when we feel alone and are brave that someone else comes along and gives voice that they feel exactly the same way. We may think we are alone, but we are not. It’s very possible that someone was feeling the same way and was beyond grateful to cross paths with someone else giving voice and standing his/her ground in a way they needed. When we are brave on our own, social connections can be found. It’s part of finding your tribe.
Vulnerability has always been tough for me. Honestly, I haven’t always liked Brené Brown’s work. I stopped reading her first book years earlier because I didn’t like what she had to say and I found her too repetitive. Looking back, I wasn’t ready to do some of the work I needed to do.
I still have work to do. LOTS. There is so much I don’t have figured out. I’ve figured out this much: I’ve become more comfortable braving the wilderness.
One sunny day in early April, I decided it was time to pump up the tires on my bike and take it out for a test run. Truth be told, it was just as much of a test run for me, too.
Every year I wonder how I’m going to fare with many of my sportier endeavors. Will I still be able to hike? Can I bike? Am I slower? How far can I go? What kind of energy level will I have? Will I be able to maintain it? Lots of questions bombard my mind, and I can’t answer any of them until I get out there and see what happens. I visualize doing all my physical goals effortlessly and flawlessly. Visualizing success is a healthy practice. It can frustrate me when I don’t visualize the small steps to reach my goal, but I’m getting better, slowly.
Last summer biking was tougher for me. Little changes in incline bothered me and I fatigued too quickly from the extra exertion. If I rode too far, the final stretch was interrupted with lots of rest stops. It always happened in the second half of the ride. I ended rides thoroughly exhausted feeling like an old crump. The strength and cardio work I had done in other activities didn’t transfer over to biking. Last summer was hard.
Each year it feels like I’m starting over.
I biked close to home and biked around the neighborhood. Any hills were neither steep nor long. I was ready for home after only fifteen minutes. My goal was thirty minutes, so I kept pedaling, thinking of flat routes that wouldn’t challenge me. I kept talking to myself, repeating my rule to take it easy. There was no need to push. I’ve had a tendency to push myself hard. Pushing too hard is what caused some of the hardness and disappointments last summer in the biking and hiking departments. On the other hand, sometimes I’ve had to push hard to be heard, to assert myself at school, or to travel places. No one else was going to do the work for me, nor should they.
Here on my bike, I didn’t have to go fast. Easy does it. Take my time. Remember to breathe. Coasting offered welcomed breaks to reset and normalize my breathing.
A couple other rules took shape on my test ride.
On that particular day, I was just out to get my bearings. I needed to do some self-assessment. I enjoy a good pace if I can handle it, but I bike more for recreation. I am not interested in doing a Tour de France. If the ride became too hard and I wasn’t having any fun, I was less likely to do it again. I do hobbies I enjoy, not those I despise.
There are plenty of parts of my life (medical parts) that I do not enjoy. I am very intentional about my choices with the rest of it. Having fun is part of my well-being.
I love biking on Wisconsin’s bike trails. There are some beautiful routes that pass alongside farms, woods, and prairies. My favorite provides a perfect mixture of sun and shade.
The more I practice, the better I get. It was a small sign of encouragement that stayed up as a permanent poster in my classroom for years. I will build on each small success and every ride. Greatness takes time. Professional athletes train for years to make hard work look effortless and flawless. I forget this often when so many of my attempts are filled with concerted effort and countless flaws. Failing is tough. Failing teaches us how to be better and stronger. Failing is valued practice, and practice makes perfect.
Here’s the thing – I don’t need perfection. For my purposes, I’ll define perfect as being fit enough to do the long bike rides I want with confidence and strength. It means I will enjoy the ride and relish in greatness when I get it. Repetition and practice bring me what I need for happiness, not perfection.
Maybe the saying about practice needs to shift from making something perfect to bringing happiness.
These three rules got me biking again. They will work for me when I go out on my next several rides. I hope they can help anyone who is ready to embark on a new physical activity. Maybe it doesn’t even need to be anything physical. Any new activity would work. Easy does it. Slow down and don’t go too fast or push too hard. You’ll get where you’re going. Things have a way of working out. It’s okay to take your time and get something right.
Life is meant to be enjoyed. I don’t believe we are here to be unhappy or to suffer. I want to take every opportunity for happiness that comes my way. I will seek out happiness. Some parts of life come easily. Hopefully, many things are easy. There undoubtedly will be a few flops ranging from tiny to colossal, but mine have taught me needed lessons. I keep practicing. Life is a mixture of enjoyment and practice.
I finished my ride and reached my thirty-minute goal. My body felt more than ready to be done. I worked hard, but I could still walk, talk, and otherwise function normally. All good signs I didn’t overdo. I have learned (through failure) that it’s good to stop physical activity before it stops me. My energy level was so good I even tackled a couple of tasks outdoors before heading inside.
My test run was very successful. My bike worked fine and so did I. Going on that ride made me feel empowered. There was a strong sense of accomplishment that left me feeling refreshed and energized. I had control of something in my life. I had forgotten how good I (eventually) feel after a bike ride. My heart felt stronger and each breath was fuller and deeper. I felt more confident to handle other challenges.
I still need to figure out how to handle some fatigue issues. My anxiety button gets pushed too quickly when pedaling becomes hard. Then anxiety pushes my panic button. Hopefully, my “Easy Does It” reminder will kick in at these times and keep panic far away.
Time has passed and now it’s June. I can bike from home to do a couple short bike trails. My next step is to put the rack on my car so I can do rides that gradually lengthen. As long as they remain relatively flat my enjoyment level will stay high. I plan to enjoy many beautiful rides that make me feel fit and healthy throughout the long summer.
Two weeks ago my oncologist told me some devastating news – he was leaving. It’s honestly one of the hardest things I’ve heard at an office visit over the years, and trust me, there have been some tough conversations.
He is leaving the UW health system.
He is moving to Florida.
He said he had to go.
What does that even mean?
I know I have been unhappy with some of the management decisions that have trickled down and affected my care. There have been changes I don’t think serve patients’ best interests. There have been facility needs that have gone unmet or approached with band-aids rather than true solutions. There very well could be demands put upon him that I know nothing about and he feels he can’t work in an environment that doesn’t match his philosophy anymore. I don’t know anything for sure other than he is leaving.
He is a GOOD DOCTOR. The best.
I understand he has to do what he needs to do. I can’t be mad at him for doing what is best for him. However, if he’s leaving because of some bureaucratic crap coming down from people who have lost their connection to treating, caring, and curing people with cancer, then I am outraged. My gut tells me to be outraged.
Whatever the reason, I am losing my oncologist.
I feel such sadness and an immense sense of loss. I have that feeling of a small child who suddenly discovers she has lost sight of her parent in a grocery store and stands frozen and scared as she begins to cry. I feel broken like a mirror that has shattered into many shards of sharp glass. The image looking back at me is now jagged and distorted. I feel like a kicker who missed placing the final kick through the uprights by inches in a championship game. Everything feels wrong. I am all out of sorts.
My oncologist has been a constant in my life for more than seven years. I’ve seen him every three weeks for the last three years. I’ve known him for about fifteen years because he was also my mother’s oncologist. I have held him to a very high standard. I’ve depended on him to be there for me. This is someone whom I’ve trusted, respected, and knew was one hundred percent on my side. He is a good blend of medical expertise and hope that every oncology patient needs. He understands I have many questions, I worry, and I’ve always wanted (and will continue to want) aggressively appropriate treatment options. I will choose option A with challenging side effects over option B with lesser effects if A can potentially do better work than B. Every. Single. Time.
He’s gone to bat for me on more than one occasion.
He knew how badly I wanted to keep teaching and helped me keep doing what I loved doing for years. He also told me when he thought it was becoming too tough and unrealistic.
He suggested supplements that have helped me feel healthy and strong.
He encouraged more testing that opened doors to current protocols. Protocols that have been good for me.
My oncologist understood me. He viewed me as a person and not just as a patient. I have grown very attached to him. I will miss him.
Where do I go from here?
I am fortunate for a few reasons. The UW Carbone Cancer Center where I receive care is one of the top cancer centers in the country and the only comprehensive cancer center in Wisconsin. I know I will continue to receive quality care. I am also lucky that if my oncologist is leaving, he is leaving at a time when I am doing really well. I can only imagine how much harder this would be for me to handle if I were struggling physically. Lastly, my oncologist has taught me well. I’ve learned a lot from him about my health. He has really shaped my thinking since we embarked on our doctor-patient relationship. I daresay I may have rubbed off on him, too. At least I hope I have.
I am not always an easy-going patient. I’ve edited consent forms before signing them. Someone there once compared metastatic breast cancer to a cow that had been let out of a barn. It’s Wisconsin. I added on to that analogy and told him, “Just because the cow’s been let out of the barn, it doesn’t mean it can crap all over the pasture.” I’ve questioned, I’ve pushed back, I’ve disagreed, and I’ve complained. Mind you, I’ve also agreed, supported, amazed, and sparkled because that’s the kind of gem I am. And I am a gem. I like to think my spirit has never been diminished there because of my health status.
Oncologists come and go. I understand this is true, perhaps I have been fortunate that it took this long to happen to me. People move on in the professional world all the time. Yet an oncologist is very different. In my eyes, an accountant, dentist, plumber, chef, lawyer, teacher, or other professionals all have very different relationships with the people they serve. The relationship with a doctor is different, more intense, and more personal. I feel lost, abandoned, and alone. This person just isn’t going to be around and that makes it similar to a death in some aspects. A good friend of mine has had two oncologists leave her, and a third tell her she couldn’t see her again because she has passed enough benchmarks in time and is there is no evidence of disease.
The process has started to find a new oncologist so I have one in place when he leaves in a couple months. If you know me, you won’t be surprised that I’ve compiled a list of requirements my next oncologist must have.
My oncologist needs to be:
My oncologist must:
Sure, I have high standards and I am not going to settle for someone who doesn’t meet them. A good fit is essential for my best care.
I am confident I will find the right fit.
Unfortunately, I feel the time has come for me to move away from the smaller clinic setting I love so dearly and transfer to the center at the giant hospital. I need to put more weight behind a preferred oncologist than my preferred location. Truthfully, I’ve heard whispers that the smaller clinic may not stay open. I wouldn’t be surprised if it closed. It would be consistent with the kind of nonsense decisions that have been made regarding that smaller setting. Then, once again, I’d have to make a move with either a new doctor, a new location, or both. More importantly, I don’t know if I can continue to go to my current clinic once my oncologist leaves. Maybe I need a fresh start. It could be the best choice I can make.
It would be tough for me to leave and make this change. I’ve also grown very attached to my nurses, NP, and even the schedulers and people at reception. Everyone is so friendly and it’s one of the reasons I prefer the smaller setting. I get attached far too easily. Still, I must put myself first and make the decision that serves me the best.
I will be fine. I have time to accept this change, make a plan, and transition positively whatever I decide. As for my oncologist, I will thank him, say goodbye, and be forever grateful that I have been in his care for so many years. He’ll always be my oncologist. I’ll just have two now.