Three Lenses to Braving the Wilderness

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.

Lens One: Braving the Wilderness Brené Style

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.

Lens Two: Braving the Wilderness with Cancer

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:

  • I share what I want about my health and expect my privacy to be respected.
  • I do not have to explain or justify my feelings, nor do I need to provide a reason so others understand.
  • I can’t trust a person with the big stuff if someone has betrayed that trust with smaller stuff.
  • I need to feel physically and emotionally safe in order to feel connected to someone.

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.

Lens Three: Braving Well Together

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.

Consider responding:

  • Have you read any of Brené Brown’s books? What stands out to you?

Three Rules to Get Biking Again

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 held one rule heading into this spring’s inaugural ride: Easy Does It.

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.

Rule #2: Enjoy It.

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.

Rule #3: Practice Makes Perfect.

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.

Biking #2 5:28:17 copy
Here I am taking a break on my favorite trail in 2017.

Consider responding:

  • How do you apply Easy Does It?
  • What are some guiding rules for your life?

 

When Your Oncologist Leaves

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:

  • Accessible
  • Hopeful
  • Positive
  • Empathetic
  • Personable yet professional
  • Up to date on current research and new treatments
  • A lot like my current oncologist 🙂

My oncologist must:

  • Have a breast cancer specialty
  • Keep a very close eye on me
  • Advocate for me
  • Remember I am a person and not just a patient
  • Accept and even enjoy my personality (I’m anxious, I’m smart, I research a lot on my own, I advocate for myself, I can be intense and insistent, I’m thorough, I’m hopeful, I’m fun, I cry, I’m sensitive, and I’m tough).

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.

Consider responding:

  • What helps you when you need to make a difficult transition?
  • What qualities or characteristics do you look for in your doctor?

Invisible Crutches and Hiking

Summer arrived right on time. Last weekend brought a picture perfect day. Little clouds scattered themselves across the blue sky. Green leaves danced on tree branches, delighted with the sunshine. Green grass swayed in the warm breeze. Frogs on the ground sang to one another but still went unseen. Birds called out to each other from branches with their song. Everything was fully alive again.

I went for a hike in Pheasant Branch Conservancy.

I enjoy hiking there for many reasons. Sometimes I enjoy the shade and protection of the trees in woodland areas. When phlox blooms, it can almost completely cover some places in shades of purple and white glory. Other parts are wide-open prairie. The watershed is of particular interest to people and wildlife alike. The area even has geothermal springs.

I love the hill the most. It offers unparalleled views of the watershed as well as of the Capitol building in the distance. It’s never crowded. After the climb and I’m on top looking out at the conservancy wetlands, I take a well-deserved rest for a few moments. I’ve even done warrior pose on the lookout platform to remind myself of my strength and celebrate my accomplishment.

The path leading to the top had been closed earlier in spring because it was too wet to have people hiking it. My understanding was there was a mix of safety concerns for walkers and also concerns to protect the trail from damage caused by people stomping all over it before it had hardened from the spring thaw.

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Part of Pheasant Branch Conservancy

My hike last weekend held challenges for me. I didn’t know if the hill path was going to be accessible or not, so I parked my car farther away so I could do a long quality walk if it wasn’t open. My hike wound up being a little longer than I wanted and I got hotter than I hoped. I don’t function well when I overheat. I was warm from the start but I refused to wimp out on the first truly warm day when there would be months of summer heat ahead of me. I enthusiastically convinced myself this was conditioning and I could do it.

I could do it, albeit not very enthusiastically or convincingly.

I discovered the hill path was open and thought I could manage it. I wanted to make it to the top. It’s never been terribly steep or long. However, my walk was plenty long already not including the hill. The ground was still muddy from recent rain in a few spots. There always are uneven parts and I need to watch my footing. I had about five minutes or less left to reach the top when I decided I should turn around and make sure I had ample energy to get back to my car. A tinge of disappointment tugged at my heart, but I know my body well. It was time to head back. I knew I would come back soon.

On my trek down, I met a man going up. He was about my age, give or take a few years. He hiked on crutches. He wore a boot on his left foot like you’d see on someone who had had surgery or had injured his foot. A smile on his face exuded cheer.

I didn’t need to see this man. Or maybe I did.

Crutch Man was obviously fit and strong. I was amazed by how steady he appeared. The nearest parking lot was already a good distance away to have traveled on crutches. Here he was taking on a climb. I marveled at his confidence. I wanted the kind of will power he possessed. It appeared like this hill was no big deal to him. It was too big of a deal for me to push myself with two strong legs and on two feet. The image of him accomplishing something that I wasn’t doing stuck with me for the rest of my walk. It stuck around for the rest of the day.

I felt I had invisible crutches.

How did he manage? What kind of mindset did he have? How could I get it? What was the lesson for me to learn?

Crutch Man, if you’re by chance reading this, I’d love to talk and ask you these questions directly.

What’s easy for one person is challenging for another and vice versa. I imagine I do (or have done) things that others can’t fathom. Teaching a room full of second graders could fall into that category. Living well with cancer could be another. I deal with a lot of medical stuff. I travel on my own. I support myself. We all have something.

Crutches are there to support you while you need help, not keep you less mobile indefinitely. Someone wouldn’t use physical crutches longer than what was needed. Invisible crutches are often used longer than necessary. They are comfortable and safe. They can’t be seen so the owner may not fully realize they are even using them. They are that little voice that nags we better not do “x” for any number of excuses but most of all because then there would be no use for the crutches anymore.

What are other names for invisible crutches people have that are harmful rather than helpful?

Fear

There is fear of being hurt, physically or emotionally. There is fear of rejection. Fear of failure is a big one. Failures only keep us from success if we don’t try again. Fear of change is another possibility.

Getting rid of this invisible crutch lets you live more boldly. What if you don’t meet a goal on the first try? So what? I see two possibilities. You try again or move on. What if everything does go as hoped? Wonderful! Do not fear success. Abandon worries and enjoy your moment in the sun.

Comparison

Comparison is an invisible crutch if you compare yourself unfavorably to a colleague at work, another’s diagnosis, progress, another relationship, or some type of success that you haven’t experienced. There seldom is enough information to make a valid comparison. Why do we do this? I know I’m not the only one. Getting to the top of the hill may have been a goal of Crutch Man’s for some time. Perhaps he had been chunking together small successes for months. Maybe he is part bionic. I have no idea. I don’t know his story. The story I initially told myself was he was better than me and I must be a loser. He very well could have been more capable than me at that moment, but I am definitely NOT a loser.

I know I can hike the hill. I just can’t hike the hill, include a long walk, and do a little gardening all on one hot day (which is what I tried). People are always comparing themselves to others with results that usually find they don’t measure up. I need to stop. Who’s with me? The only thing I need to compare myself to is my own progress. Even then it’s silly because comparing myself to the “me” of my past doesn’t help with the “me” of my present.

Live in the now and forget about comparing.

Limiting Beliefs

Limiting beliefs and negative self-talk get you nowhere. They may cause regression. If you think you can’t do something, you probably can’t. If you think small, you may be successful but you might not fulfill your potential.

If you think you can, you may very well succeed. If not, you will learn something that will help you move toward your goal. A positive mindset propels you toward success. An “I can” attitude goes a long way, even if you aren’t entirely sure. How I see myself as a success or failure is part of my identity. I choose to see myself as a winner.

Others

A few of those limiting beliefs may be opinions others have thrust upon you. I have gotten a lot better at not listening to these, but one creeps in every once in a while. Then it’s harder to give it the boot. I was told earlier this week I couldn’t do something. I did it.

Focus on those around you who are supportive. These helpers are not crutches. They are the ones who teach you to fish rather than give you fish. They teach you how to do something rather than do it for you. They encourage instead of criticize. They pick you up, dust you off after you fall, and tell you to keep trying.

Status Quo

Sometimes an invisible crutch is that everything is just fine. Nothing needs to change. Why push to hike a hill when flatlands are much easier? Why make life harder? Life is plenty hard already.

True, but without the hill, I don’t get the panoramic view. I don’t get to be where Native Americans chose as a location for burial grounds long ago. I don’t get the feeling of satisfaction I get from many things when I don’t do the work. Being at the top is worth the effort.  The view is worth the work.

Crutch Man wasn’t there to show me up and make me feel sad about turning back early. I may not have encountered him at all had I kept going and looped around the top of the hill before heading back down.

I was supposed to see him.

He reminded me I am stronger than I think I am.

Sometimes I forget.

He was there to show me if he could do it, so could I.

Thanks, Crutch Man, whoever you are.

You keep being you.

I’ll be me.

Walk on.

 

Patient and Family Advocacy

Patient and Family Advisory Councils connect patients and family members with employees in the healthcare system. Members provide input on how to improve the patient and family experience in a specific area. PFAC is the shortened name for these groups. Patients and family members who have been caregivers for patients are called PFAs.

PFACs are a way for providers to gain viewpoints from the perspectives of those on the receiving end of care. Participating in patient and family advisory committees gives patients and family members the opportunity to become advocates for their own health care and that of others. It is also an opportunity to give back and stay involved in the health community.

I joined a PFAC oncological group in the spring of 2015. It focuses on any aspect of oncology and welcomes participants who have been affected by any kind of cancer as a patient or family member who has received care in the UW Health system. My understanding of what happens on more of a business level of health care has been deepened. Surveys are often used to gather and then aggregate information from PFAC members ahead of scheduled meetings. I have completed many. There usually is a guest presenter on a topic.

Truthfully, I often feel as though final decisions have already been made and the purpose of patient/family input is simply to agree with what is being presented. As a result, I often feel somewhat disagreeable when I say something different from what I think they want to hear. Yet, I’m not there to make them feel good and/or validate their work. I’m there to offer my honest feedback and to advocate for the best patient-centered care possible. I’ve also gleaned a few insights into possible options from which I could benefit. Those are added benefits to my participation.

I am one of two members in my group who receives care at a building outside of the hospital that offers cancer treatment in a smaller setting. I find smaller is much more personalized and this is the right choice for me. I am also the only member of the ENTIRE group who is under current treatment. It strikes me as odd. I would think there would be a higher need to recruit current patients for input when it’s THEIR CARE being discussed. My status gives me a unique perspective where I can lend my voice to what I currently experience and my observations.

I thought some readers might be interested in some of the topics we’ve discussed over the past four years. I do not feel I am violating any privacy policies by sharing in general terms. I will not refer to anyone by name. My purpose is to provide a glimpse into the world of Patient and Family Advisory Councils. Sure, I have some opinions and they are mine to share. I am confident you’ll know those when you read them.

The following are a few of the PFAC topics that have been discussed:

Clinical Trials

  • A speaker was brought in to present information with an accompanying PowerPoint. The presentation on clinical trials was largely informative. Time was spent providing feedback on the cancer center’s website dedicated to trials. Feedback was solicited on how to raise awareness of and participation in clinical trials, and discuss reasons why patients may not choose to be involved in them.
  • I perceived the hospital perspective was that patients often do not want to be involved in trials. I believe there are reasons that validate that perception. Personally, I would not choose to be involved in one if I may be in a group that is not receiving the strongest medicine available as compared to another group. It’s too big of a risk for me. Many trials are changing so all patients in a trial receive the drug being tested. If patients understand that, then participation may rise.
  • Trials have also become very specific because of targeted treatments. Often times, it’s the trial sponsors who have restrictions that exclude interested patients because patients do not fit a sponsor’s requirements for the ideal sick patient. Patients are too sick, not sick enough, or something else. Patients would like the opportunity to participate (and potentially greatly benefit), but they are told they cannot. In the end, it’s the sponsor rejecting the patient, not the other way around.

Chemotherapy Preparation

  • One evening, oncological pharmacists presented information on why patients wait so long for their chemotherapy drugs. There have been days I’ve waited three hours from the time after an office visit until my drug drips into my body. It takes considerable time to make chemotherapy for an infusion. Pharmacists can’t make it until the oncologist has released the order for it. This is dependent on the patient’s office visit and dictated by results from labs looking at blood counts and metabolic functions. Kidney function, white cell counts, liver enzymes, and other numbers or functions out of kilter could delay or cancel a treatment. Each drug is made specifically for a patient. Dosing is specific to a patient’s needs and once made it can’t be used on another patient if the intended patient is unable to use it. It expires after about twenty-four hours. Money is lost if it goes unused. My blood boils a bit at this economic consequence because in my world patient care outranks profit every single time. Hiring more pharmacists would lessen the time a patient has to wait. Patients would get what they need more quickly. An on-site facility to make the chemo would be helpful, but apparently this isn’t deemed essential. Again, financial factors are at the root of these decisions. My blood pressure can only climb because of them. Don’t mind me, I’m just a patient.

Genetics Clinics

  • On another evening, a presenter gave an overview of genetic counseling and progress in identifying genetic markers that increase a person’s cancer risk.
  • The benefits of DNA banking were shared. I was somewhat unimpressed as it seemed the biggest benefit would be to the company providing this service. DNA banking is an option available outside of genetic counseling. Many questions float around in my head concerning how my DNA would be used.

Appointment Scheduling

  • At first, this didn’t seem like a terribly pressing topic, certainly not one to take an entire PFAC meeting to discuss. But it did.
  • The chemotherapy managers and oncology directors were gathering input on which patients needed to be seen by oncologists and which patients could be seen more routinely by nurse practitioners. Who was considered urgent? I get good information and a slightly different perspective when I see my nurse practitioner, however, I will always prefer to see my oncologist over her. He has more expertise.
  • Other members in the group nodded their heads and quickly agreed that this was a great idea to see a nurse practitioner more frequently. It isn’t from my perspective. This is where my situation as a current patient is so important. Doesn’t every cancer patient think his or her care is urgent? I am just as urgent and as important as another patient. It seemed to me like some patients were being labeled as more valued than others. The thought was perhaps patients who were further out post-treatment could be seen by a nurse practitioner if they only came in once a year. Well, no, these patients need to be seen by an oncologist, too. Recurrence happens even when patients have passed a five-year cancer-free benchmark. I’ll say it again: the oncologist has more expertise. A nurse practitioner may miss something that an oncologist may notice.

New Clinic Design Planning

  • A new campus is being designed on the far-east side of Madison. An interior designer presented current design plans that were extremely comprehensive and detailed. I was impressed with what is being planned. The plans are patient-centered and inclusive to coordinate many aspects of care in one setting.
  • Input was sought after for any aspect of this clinic. I felt the designer presenting genuinely considered all comments were important whether they were about parking lot locations to what kind of treatment room options would be enjoyed or needed (open, semi-private, or private). I seemed like the lone voice expressing how important private treatment rooms were for patients. As a patient, I have intensely private discussions about my health with my treatment nurse while receiving treatment. I don’t want to share that information with others, nor do I want to hear their confidential conversations. HIPAA laws exist to protect patient health information. I expressed very strongly that privacy must be ensured in treatment areas. I was thankful someone agreed with me who had called in for the meeting. Even if privacy were not a concern, cancer patients have compromised immune systems and should not be sharing space with others or others’ family members who are sick and may or may not be showing symptoms of a virus.

The recommendation in my group is to serve in a PFAC group for five years and then make room for someone else. I don’t know how closely that guideline is followed; some members in the group have been there more than five years already. I do enjoy the other members who have been former patients or caregivers for family members. Everyone brings something different to the table. We volunteer our time because we feel we can make a difference. We all advocate for the same thing – the best care for patients.

Consider responding:

  • Have you ever advocated for change in your health care or that of a family member? How? What happened?

 

What’s at Your Core?

Everyone has core themes – themes that make you who you are. Identifying what these are as an individual is a huge part in understanding your identity. Core themes become part of a healing plan because when you know who you are, you know your strengths. Leaning into your strengths can lead to faster healing.

We should always align what we do with our core beliefs. It’s part of being well and being happy. We all need to live our truths and core values.

I hadn’t thought much about my themes other than I was a teacher, a friend, a daughter, and that kindness was really important to me until I was diagnosed in 2012. With a lot more time on my hands to ponder my purpose, I could really expand on themes for my life. Then I could see how well these matched with my core beliefs. If there was a natural flow, then I knew that I was headed in the right direction. If something felt forced or there was resistance, something was out of line and either didn’t belong or needed a bigger adjustment.

Here are my core themes that I am reaffirming and reminding myself of as I live with cancer:

I am important.

My needs are important and need to be put first. I don’t come last. Yes, helping others is part of my purpose, but I need to make myself a priority. It feels really good when I snuggle in a blanket and sit by the fire with a book. I enjoy putting something else aside so I can go for a nature walk. Taking a break to drink a cool glass of refreshing green juice tastes heavenly. I have rediscovered the joys of reading and writing. I have gifts to share through teaching, writing, and journaling. My work is valuable.

I also need to choose activities and people who are calming, supportive, and fun. I am too important to put myself in harmful, negative, and stressful environments. There is no need to apologize or explain. No drama for me. I lived as a compromiser for too long to avoid arguments. Honestly, I thought it was easier that way. The problem was that the compromises, or all out giving in, was not calming, supportive to me, or enjoyable. It isn’t selfish to put yourself first. It’s self-care.

My life still has great purpose. When I taught, I made a difference day-by-day, child-by-child. Now, I approach new endeavors with that same driven ambition I had with teaching, but also with more balance since my schedule is highly flexible. What I have to say is important to share.

I am strong.

Another core theme is that I am strong and immensely powerful. No, I am not overly physically strong, but I’m getting stronger. I could never climb the rope in gym class or do a decent pull-up. Those are claims to fame that still elude me. But I have enough inner strength to match a hundred rope climbs and thousands of pull-ups. That’s right, thousands. I had the power to get a classroom singing to original lyrics and choreographed movements about respect for an assembly, AND I was able to get them to think it was cool because it was cool. I have the power to advocate for my best health and make it the best it can be.

I will exercise and eat well to feel better and give my body what I need to be healthy. Health doesn’t happen with just one or the other. Eventually, poor eating choices catch up with a person even if he or she is fit. Great eating choices don’t do a lot if someone never moves or exercises. There also is an emotional payout to exercising and eating well. I get my thirty-minute minimum every day.

I’ve had to dig my heels in a lot more over the past seven years, particularly in terms of what I will accept in terms of how I’m treated. As examples, I was not happy with past phone conversations and what I considered bullying from a long-term disability company that did everything in its power but help me. I spoke up, but it’s a long story and a subject for another post. I’ve also called the patient relations department a few times where I receive treatment over the repeated delays and long waits patients have in receiving treatments because of financial decisions rather than decisions focused on patient care. Here again, it’s a subject for another post. The take away is I’ve become strong enough to speak up for myself when my needs aren’t being met or someone has been rude.

I connect with nature.

I need nature. I love healing green spaces with lots of trees. I absorb the energy. Two summers ago on a short vacation, I observed this first hand. I had traveled with my sister to Door County on Wisconsin’s peninsula. I usually am ready sooner than she is in the morning. I would get a little droopy and sluggish waiting for her before we started our day. My energy level completely changed by simply driving through one of the state parks as a detour connecting one town to the next. The woods provided a combination of nature, peace, energy, healing, and spirit for me all in one. My mood shifted for the better.

I experience the same feeling wash over me whenever I drive into the UW- Arboretum. My mind unwinds as I meander along the paths. It’s the green, all the trees, and being in a place where any humans I meet are there for the same thing as me.

Peace and kindness are recurring themes.

I am all about peace and kindness. In 2013, I finally started a peace journal, made up of Bible passages, ideas from other religions on peace, poetry lines, famous quotes, songs, and anything about peace that resonated with me. When I quiet the house and everything around me, everything narrows down to particular words and thoughts. Then everything opens up big time. It’s pure meditation and oxytocin in action. My spirit soars and I feel like I leave or that I’m lost in the moment. Maybe I’m actually more present than ever. I believe a lot of people pray for peace, which is more important now than ever in today’s world. I read a distinction someone made not too long ago that if people prayed, meditated, or just thought (whatever you want to call it) to feel peace rather than for peace, it would be possible to achieve lasting peace between people in the world. We need to feel it within first and push it outward.

I am a teacher and a learner.

A core theme as a teacher and learner has been central to my life. I loved elementary school. I did well. Reading and immersing myself in a world of story couldn’t be beat. From as long as I can remember, I always loved learning and sharing what I learned. Whether a student or teacher, school was a place where I felt safe, successful, and supported. It’s what I wanted to give my students. Teaching always just fit who I was. I can’t explain it any other way. Sometimes I entertain thoughts of returning to school for courses in writing, history, archaeology, and literature just for fun. For now, I enjoy exploring what interests me on my own.

It is no coincidence that in work with my fitness coach I am focused on a lot of work to strengthen my physical core. I know what is at the center of my personal core. I have rock-solid personal core themes and know who I am. In this sense, I am very well aligned.

Happiness involves living in accordance with your core themes. What you identify at your core should be those things that bring you happiness, enjoyment, and peace. Associated words for these feelings may be energetic, hopeful, valued, proud, loving, joyful, and thankful. You may reconsider your actions if you associate feelings of guilt, boredom, frustration, anxiety, helplessness, discouragement, and anger with them. It seems obvious, yet many people stick with actions or beliefs that go against their core out of habit and because making a change is hard work. Make little changes. In a few months time, a small shift has happened where you feel more like you.

We all deserve to be our best.

Consider responding:

  • What’s at your core?
  • Where/when do you feel most like YOU?