Pelican Lessons

Sanoviv Medical Institute is situated on the Baja Peninsula in Rosarito, Mexico. It’s built on a cliff looking out at the Pacific Ocean. Every day seems sunny. A lulling symphony of rolling and crashing waves repeats itself over and over. It’s a small hospital that specializes in functional medicine and both integrative and alternative treatments. Many guests visit for a health retreat. A smaller group of guests are patients with more serious health conditions. Research there focuses on how immunity can be supported at the cellular level in fighting disease and optimizing one’s best health. The physical, mind, and spirit are all important components of a healthy individual.

I left Wisconsin for Sanoviv almost as soon as my school year ended in 2016. My goals included strengthening my immunity, detoxing my body, and learning more successful ways to deal with stress. I was open to hearing what they recommended in terms of treating cancer. My oncologist at home was curious and doubted anything would interfere with my current protocol. I wouldn’t be missing any treatments at home by going. Neuropathy had taken a toll on my poor feet. I was also suffering from painful hand-foot syndrome. Of particular interest to me were the options for treating disease from a cellular level after disease had already happened. I signed up for a three-week cancer support program. If nothing else, I was off to Mexico in an idyllic setting and getting away from my life at home. It was even better if my health improved.

There are many moments from that trip etched away both in my memories and in a book that exists in a forever state of revision. I met people from as far away as Nigeria, Australia, and China, and as close to home as Chicago. My days were scheduled from 6 AM to about 7 PM. Some of it was not pleasant, but many parts of it were filled with beauty, purpose, and deep lessons. What I want to share briefly are my memories of the pelicans.

Pelicans flew along the coastline daily. I had never held any affection for these birds. I thought them big, ugly, and dirty looking. If a bird could be fishy, pelicans were fishy as well. My opinion transformed at Sanoviv watching these strong and graceful birds. I admired how they would pass by in single file while floating on an air current. It was like each bird was connected to another with an invisible string. They reminded me of bikers drafting behind a lead bike so as to block the wind and use less energy, an idea which bikers got from birds no less. At other times the pelicans arranged themselves in groups of four like in fighter jet formation. Wings tucked in for increased speed, yet they still managed to stay in unison with each other. These birds had an unspoken quiet beauty no matter how I saw them.

I had a very special pelican sighting on my last full day. I was sitting up in a special care area receiving IVs, looking out at the ocean in a bit of a daze, lost in thought. Far out on the hazy horizon, I saw a somewhat shapeless form. I wondered if they were pelicans, but they were too far away. Whatever it was resembled the v-shaped way a child draws birds flying in pictures. As the shapeless form drew closer, it moved off to the left and changed shaped, now reminding me more of a swarm of bees. From where I sat, I temporarily lost sight of the changing shape and figured that was the end of it.

But it was not. The shape was a small group of about four or five pelicans who were just hugging the coastline. Soon enough, they came back into view and flew by my window in a single file in one long, continuous silent flow. It was as if the pelicans were saying goodbye and purposely saluting me with their waving wings. It was a beautiful and peaceful moment that I will never forget.

Here is one of those perfect times where everything fits together magically. In the animal spirit world, pelicans symbolize regeneration and resourcefulness. I was at Sanoviv to heal and re-energize. The pelican population had dwindled in the past but presently has bounced back. Pelicans also represent resilience and determination. My spirit is filled with this same resilience and determination. My mindset is of one determined path just like the single line of the pelicans’ flight. A greater force was absolutely at work in bringing pelicans to me day after day after day. Signs are always there. I don’t believe it’s all a coincidence.

I didn’t get all the answers I wanted at Sanoviv. I arrived home feeling healthier than I had in a long time. My energy was better, my cholesterol was lower, and I felt happy. New scans were scheduled at home. These showed that returning to a more traditional form of chemotherapy was in my best interests. I would have had the same results if my scans had been scheduled before I went to Mexico. It’s interesting that one of the things I’m currently receiving today is what they suggested as my best option almost three years ago. The drug was not being used in the U.S. in exactly the same capacity as in Mexico, so I got a big fat NO from my oncologist at home. It was an FDA thing. Now it’s FDA approved.

I quickly made decisions and turned my life upside-down once more. Nothing was how I wanted it. Very little seemed the same. Life looks very different to me now. I have been resourceful, resilient, and determined, just like the pelican. Where everything isn’t perfect, I am still here. I am finding a way.

Lessons of resourcefulness, resilience, and determination are important for all of us. We all have stories where life hasn’t turned out as we planned. Many events are outside our control. We almost always think we have more control over events than we actually do. How we respond when life becomes hard is important. There is always a choice to respond positively or negatively. We all have opportunities to adapt, regroup, and come back to either try again or go in a new direction. We rest and give it another go, approaching challenges from new angles and perspectives. We all have more grit, strength, and determination than we think we do.

We are an awful lot like pelicans.

Many times we glide with grace.

Other times we need to be in fighter jet formation.

 

Consider responding:

  • When have you needed to depend on resourcefulness, resilience, and determination?

Van Gogh and Hope

Did the Impressionist Movement only give us artistic masterpieces and inspire other artists for years to come? Please note I use the word “only” loosely. My answer would be an emphatic NO. These artists also gave and continue to give us hope.

Vincent van Gogh may not initially stand out as a hopeful figure. He struggled with both his mental and physical health. His most famous paintings will always be his main contribution to the world. Starry Night is one of my favorites.

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Van Gogh painted Starry Night in 1889 during his stay in an asylum near Saint-Rémy-de-Provence.

Today’s post combines my love for inspiring quotes with blogging. Lately, I’ve come across several quotes from Van Gogh that have blown me away. I do not know in what context he said them or really if they were significant to him at all. I tend to believe they were significant to him based upon their content and some of his paintings. These are some of his words that have inspired me.

“Be clearly aware of the stars and infinity on high. Then life seems almost enchanted after all.”  ~ Vincent van Gogh

Life is enchanted. It’s easy to get wrapped up in its day-to-day minutia. There’s a repeating cycle of laundry, groceries, cleaning, yard work, and for me, medical appointments. The time I spend trying to live well with cancer feels so far away from noticing moments of infinity on high. There is always something health related even if it’s a little something. Daily medications are a good example. I see my port bumping out from my chest every day. My wig. These all are routine things but constant reminders of how my life is different. Making time to recognize and take in infinity is a must because it provides balance and perspective to life in my medical world.

It also sometimes feels like everyone is so focused on their own lives that moments where we interact with one another in meaningful ways are fleeting. Stores are understaffed. Customer service has all but disappeared in some businesses. Friends are in a rush. I treasure time with them. Social media, texts, and emojis replace conversations. Living life through social media is not very enchanting. I live in this world, too. Emojis are quick, effective, and sometimes highly amusing.

Looking up at the stars reminds me how big the universe is and that all my big problems are really small. People don’t make time to gaze at the stars and wonder anymore. Unless you live in the countryside far away from man-made light, getting to see a true starry night where shooting stars are common and a person can witness infinity on high is hard. City stars are not the same as country stars. I remember a geography course for graduate credit I took in Ecuador around the year 2000. It was in the jungles off of the Napo River where darkness closed in all around me where I saw the best starscape of my life. Utter darkness met me in every direction except upwards. Stars bedazzled the dark above. I only took them in for a few minutes because we were encouraged not to stay outside very long in the blackness for our own protection. Large cats stalked unseen and unheard in the night. Yet, for a few sacred moments, I saw the heavens like never before. It stays with me as a singular moment I’ll remember forever.

“I confess I do not know why, but looking at the stars always makes me dream.” ~ Vincent van Gogh

Dreams give us hope. We wish upon stars. Stars awe us. Songs are sung wondering what they are made of and comparing them to diamonds. My dad sang Twinkle Twinkle Little Star nightly to me. Starshine has always mesmerized me. If light from stars can travel trillions of miles to reach us, then can’t we also believe our dreams may come true? Can I wish to live? Can I wish to be completely healthy again? So often when we dream while sleeping, we don’t remember what we dreamt when we wake up. We can control what we dream when looking at stars and dream of what makes us happy.

Did Van Gogh say these statements before or after he painted his masterpiece? I don’t know. It doesn’t matter to me. It is more than enough that he said them because it makes me look at my favorite painting of his with more wonder and awe. I work hard to wonder and awe about life as much as possible as someone with metastatic breast cancer.

“If you hear a voice within you say you cannot paint, then by all means paint and that voice will be silenced.”   ~ Vincent van Gogh

 

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My attempt to create a Ukrainian egg in the style of Van Gogh.

Am I a painter? No. I am confident there would be voices other than an inner voice confirming it. Even so, I do believe in doing the thing I think I can’t do. I do plenty of new things (new hikes, bike paths, foods, small risks). I do plenty of hard things (conflict, scans, side effects, funerals). I think Van Gogh was thinking about all the opportunities we don’t pursue because we convince ourselves we can’t for any number of reasons. The negative inner voice is quelled when I take a NO and turn it into a YES. Maybe this quote of his is telling me is I should give painting more of a try. I’m up for finger painting. The swirls of color would feel so Van Gogh.

“Close friends are truly life’s treasures. Sometimes they know us better than we know ourselves. With gentle honesty, they are there to guide and support us, to share our laughter and our tears. Their presence reminds us that we are never really alone.”   ~ Vincent van Gogh

And . . .

“I wish they would take me as I am.”    ~ Vincent van Gogh
 

Friends take us as we are. Those who don’t are not friends or worth the trouble. My need to belong has always caused me anxiety. There are still times when I feel left out. Like Vincent, I wish everyone would take me as I am. I wish I could be okay with it when some don’t. The people who don’t aren’t worth my time. I’m reminded I only need to belong to myself.

“I think that I still have it in my heart someday to paint a bookshop with the front yellow and pink in the evening…like a light in the midst of the darkness.”   ~ Vincent van Gogh

Why a bookshop? He could have said a flower shop, a café, a market, a boutique, or any number of storefronts could be yellow and pink in the evening. Van Gogh also spoke of light. Reading is light. It gives joy, knowledge, and self-awareness. Reading can be a source of hope. Light is hope. Once again, I return to ideas of stars being the light in the midst of darkness. Books are like stars. Books shine light in the midst of darkness.

“Many people seem to think it foolish, even superstitious, to believe that the world could still change for the better. And it is true that in winter it is sometimes so bitingly cold that one is tempted to say, ‘What do I care if there is a summer; its warmth is no help to me now.’ Yes, evil often seems to surpass good. But then, in spite of us, and without our permission, there comes, at last, an end to the bitter frosts. One morning the wind turns, and there is a thaw. And so I must still have hope.”    ~ Vincent van Gogh

Call me foolish for I am one of those people who believes that the world can still change for the better. There is more goodness in the world than badness. There will always be more heroes than villains.

Springs and summers follow the coldest winters. Having said that, spring sure took its sweet time this year.

I must have hope. I must maintain hope that treatments are discovered in time to save me, to save everyone with cancer. I believe in targeted therapies that are matched to patients who have a strong likelihood of responding well to those treatments. More research is needed to develop more of these. Research equals hope. Hope is my driving force and motivation in advocating for more research directed to treatments for advanced stage cancers. I do my best to stay strong and healthy which feeds my hope. I do what I can to financially support research for metastatic breast cancer. I still have hope.

Van Gogh has said he wanted his work to express “sincere human feeling.” He succeeded many times over and over again. Hope is a kind of feeling that warms, intensifies, and empowers. How he captured this quality in his art so that it still evokes such an emotional response over a hundred years later is a mystery to me. He had an extraordinary gift as an artist. His art and words continue to give hope.

Immense and everlasting hope.

Exercise is the New Sugar

Sixty is the new forty. Eighty is the new sixty. Cocktails infused with mushrooms are said to be all the rage. Small weekend trips may replace bigger vacations. I’ve heard iTunes is out. Everywhere I turn, I seem to hear about a new trend or way of thinking.

Here is one of my own: Exercise is the new sugar.

This may not be new knowledge for many, but it is for me. I have said before that I have sweet teeth instead of just one sweet tooth. I will always love sugar. I am trying to love it less these days. I would love it if I could crave exercise like I crave desserts. It works for a while and then my love affair with sugar returns. All I can do is to keep trying. This week I felt more successful in eliminating some of the refined sugar in my world.

Every day is an opportunity for a fresh start.

Exercise feeds us better than sugar for many reasons.

Exercise and Cognitive Benefits

Exercise can give you the same effects that sugar does in terms of a quick energy boost, only with exercise the effects are long-lasting and healthy. For example, exercise improves cognitive functioning. A person’s focus is sharper due to boosted energy caused by higher endorphin levels. Exercise also improves memory. Sugar does the opposite by increasing glucose levels that slow cognitive functioning. Have you ever noticed that your brain works better after exercise and the opposite is true with too much sugar?

Exercise and Endorphin Levels

There’s more about to say about those endorphin levels. Exercise increases endorphin levels. I’ve heard that your body craves exercise and movement. When your body moves a lot, it releases chemicals like endorphins, dopamine, and serotonin as a reward for your efforts. The result is you feel fantastic and have loads of energy. Sugar makes you feel good for a few moments but has addictive qualities that keep you craving it without any positive rewards. It’s a vicious cycle of falling levels of blood sugar that you need to literally keep feeding more sugar because your body feels lousy if it doesn’t get its sugar fix. In the long run (or even just a solid walk), exercise will make a person feel happier.

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A good solid walk can boost endorphin levels.

Exercise Combats Depression and Anxiety

Reduced depression and anxiety is another benefit of regular exercise. Both high-intensity aerobic exercise and low-intensity exercise like yoga have been found to reduce depression and anxiety.

Sugar also affects mood, but much differently than exercise. It has been correlated to higher levels of tension, depression, and anxiety. Personally, it’s so much easier to reach for cookies when I’m upset or sad than to go for a walk or work out. The cookie is instant gratification. I feel comforted for a few minutes. Working out takes longer for feeling better to kick in, but I feel like I’ve accomplished something good for myself when I’m done and feel more positive.

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Yoga can reduce depression and anxiety.

Exercise Lowers Disease Risk

Exercise decreases the risk of heart disease, diabetes, obesity, and certain types of cancers. It increases your chances of living longer. Of course it does! Sugar is associated with higher risks of health problems and diseases. There are many studies proving or denying sugar’s role in cancer formation or sugar fueling cancer. One seemingly reputable study seems to disprove another that seems as equally reputable. I’m not going to change anyone’s mind on what you already believe. I will, however, provide links to two sources where I often find research I tend to trust. Check out these articles at WebMD and the Mayo Clinic on sugar and cancer.

Is there a link? My opinion is a firm maybe. For me, I believe I’d be healthier if I consumed less sugar.

So Many Benefits

Exercise does a body good. It increases energy levels. Exercise is good for muscle and bones. Weight lifting is especially good for muscles and bones. It’s a must do as people age and lose muscle mass. As early as age 30, a person can lose 5% of muscle mass every ten years. Muscle atrophy happens fast for cancer patients because of decreased levels or lack of physical activity. It takes time to rebuild lost muscle mass.

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Focus more on proper form than how much the weight weighs. Proper form helps you stay safe and healthy.

Exercise can help with weight loss. Maintaining a healthy body weight is important at any age. Unfortunately, metabolism slows as a person ages, and regular exercise helps in those efforts to keep movement and activity a priority. Someone with cancer doesn’t need to do much to gain or lose weight. I’ve both put on weight and lost weight while maintaining the same exercise routine throughout many different cancer treatments. It’s been very frustrating to gain weight when I continued to work out, but I had the peace of mind that I was doing what I could to stay strong whatever number stared up at me from the bathroom scale. Exercise will change the way your body looks on the outside and the inside. Illness is harder to take hold in a healthy inner environment.

Sugar is good for making fat, fat, fat. Your liver makes and stores glucose depending on your body needs. Excess sugars that don’t get converted become fat. Too much refined sugar and high fructose corn syrup can attribute to liver disease. High fructose corn syrup is an unnatural sweetener made from cornstarch and found as the main ingredient in many sweet treats and foods. Foods high in sugar attribute to weight gain. That’s nothing new. I find that if I take the time the read the ingredient label listed on some of the sweets I crave before eating them that I get disgusted and can walk away. It’s a good hack.

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All image credits today are from pexels.com.

Here is where I am: If sixty truly is the new forty, my chronological age suggests I should feel like I’m thirty. Newsflash – I don’t. I feel much older than I actually am due to what my body has endured. Cocktails with mushrooms are out for me because I cut out alcohol years before diagnosis. Alcohol ages a person. I also was just getting the hang of iTunes. I hope I can figure out whatever is next. I like the idea of weekend trips. I’m all in for those.

Exercise needs to be my new sugar.

Someone please remind me I believe this the next time I start to go a little crazy and feed my sugar cravings.

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?

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?

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?