Writing and Health

Words are powerful. They entertain, inform, and persuade. Whether written or spoken, words communicate. Something.

Writing is a way to self-reflect, express my beliefs, and share my voice with others. Tara Parker-Pope wrote an article in The New York Times titled Writing Your Way to Happiness. One path to happiness is through writing a personal story.

The goal is to create an “optimistic cycle that reinforces itself.” She explains that although our inner voice is choosing the words as we write, we can go back and edit our story. For example, I may choose to write a story about a session with my trainer, or planting morning glory seeds, or being kept awake by a thunderstorm. Rewriting it can bring about behavioral changes, improve happiness, and lead to better health.

Bringing about behavioral changes, improving happiness, and working toward better health are all important to me as someone trying to live well with cancer. I’ve written quite a bit about the progress I’ve made with my trainer. Through the rewriting process, I discovered how negative self-talk hinders me in my training sessions and then I made some changes. Maybe I’ll write a story about morning glories and understand why they make me so happy. Writing about sleepless nights during bad weather may motivate me to sleep in my basement where I can’t hear anything which in turn makes me feel a lot better the next day.

Stories lead us to better understand ourselves.

For anyone interested in journaling specifically about health, consider the following prompts:

  • What changes do I want to make in my behavior? Why do I want these changes? What is it I am hoping to gain? What is my plan? How can I take the first step?
  • What things make me happy from the inside out?
  • What small goals do I have that can lead to better health?

Or write a story about morning glories or something you think is entirely irrelevant to your health. After it’s written, you can look for possible connections that you didn’t see at first.

Timothy Wilson has researched writing as a way to change core narratives successfully and calls the process “story-editing.” His background is in social psychology and focuses on self-knowledge and behavior. I recommend one of his books, Redirect: Changing the Stories We Live By, for further reading if interested. He sees writing as a pathway to bring about change. A writer writes for about twenty minutes a night for three to four nights, and each night goes back to edit the narrative. The outcome is that a more honest narrative is written through reflection on consecutive nights.

It’s an enlightening process.

Try it out: Think of a recent situation where you felt some anger.

Anger is a wonderful feeling to use for this exercise because you have automatic conflict.

On the first night, just write a very brief account to get the bare bones of the event written. It’s nothing fancy. Focus on your feelings another night and how to convey those through descriptions or specific actions. Add dialogue another night. Or just see where the writing takes you each night. You really don’t need a plan if you don’t want one. Just write.

Sometimes I wind up with an entirely different piece of writing than when I started.

I see writing your way to happiness as much more of a “revisioning” of a core narrative than editing, especially where endings are concerned. Revising involves bigger changes. Some parts stay, some go. Ideas are expanded. You try things out and see if they work. In Wilson’s book, one of his exercises is called “The Best Possible Selves.” He asks a writer to imagine his or her life twenty years from now and write about how everything has gone as well as it possibly could. Details about how the events of things happened are to be included, as well as meaning, hope, and purpose. Again, writing for twenty minutes a night for three to four nights is part of the directions. It gives your subconscious time to ruminate and work through whatever needs more thought so you can make more progress the following night. I think this is the same reason you are asked to write in the evening.

The part about including details about how future events happened is important. Being specific helps you form a picture in your mind of what you want. It makes a picture with words. Adding meaning, hope, and purpose also makes your vision super clear. Clarity in meaning and purpose makes what you want more probable.

I can tell you in my version I am completely healthy, retired, and enjoying every day doing the things I love. Writing sets a powerful intention more than thoughts or spoken words. It involves being really clear on what you want and organizing your words in the best possible way to express your specific intentions. I found that reading what I wrote out loud to someone after I completed the exercise also very revealing because my soul really responded to the core beliefs that I hold the dearest about my future as I put it all out there to the universe. Writing your way to happiness is one positive affirmation after another.

Writing something down tells your brain that your ideas, thoughts, and goals are important.

Writing engages us with our thoughts and helps us process emotions. It makes those thoughts concrete. It prepares those thoughts for becoming actions. Writing really serves as a blueprint or map for all that unchartered emotional and mental territory. Regular journal writing about feelings or uncomfortable events can help lower anxiety and help a person sleep better.

In the world of living well with cancer, I have both read and written. I am still learning how to write what I know and believe about cancer.

This is how I break down words about cancer:

  • Medical journals/scientific articles on cancer findings/advancements. I’ve avoided reading many of these articles and journals as they aren’t written for patients. Once it was suggested I read one per month, but I found them confusing. Or upsetting. Or not applicable.
  • Test results also can be confusing (or upsetting, or have unclear applications), however, these are much more important to understand because they affect the patient intimately.
  • A personal health journal to document the factual side of a cancer diagnosis. Surgeries, treatments, radiation, medications, side effects, tests, appointments, and schedules fall into this category.
  • Diaries/journal writing from survivors, thrivers, lifers, however a person best identifies. There are narratives filled with tips. Some write about living with cancer. Some write about beating cancer. Some write about dying from cancer.
  • Fictional stories where characters have cancer. They read differently than biographical accounts but contain many of the same sentiments of life and/or death. Some hit the mark – others do not.
  • Advocacy writing that argues for better research and treatments for later stage cancer patients. In my opinion, the world needs more of this kind of writing. People focus on the wrong drivers of “awareness” or accuse women and men of being “negative” if they write about the hard, scary, and ugly parts of cancer. Change will come through advocacy. Current widespread attitudes need to be challenged.
  • Celebrities sharing their “I never let cancer get the best of me” stories. How courageous . . . and . . . inspiring? I think it’s just ducky if they never experienced one moment of fear, doubt, or anger. If you can’t tell, I don’t believe them. I would be more impressed if they used their platform in the public eye (that is much more far-reaching than mine) to put a mark on metastatic breast cancer that can’t be ignored or dismissed. It makes me sad. I feel like they don’t understand. Maybe they can wear pink and that will make it all better.
  • Private writing reflecting on some of the questions above or your own.
  • A few write blogs. 😉

Am I missing any?

Writing forces a person to process a pesky thought that has been floating about unrecognized or undefined. Once on paper (or the computer), it lets you see what you were thinking or feeling. If it isn’t quite right, you revise until your inner voice has spoken.

I end this post how I began it: Words are powerful. They entertain, inform, and persuade. Whether written or spoken, words communicate. Something.

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?

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?

 

My Mom: Memories of Love and Loss

My mom made the biggest impact on me from anyone I have ever known. She has been gone for six years and I haven’t written anything about her, not even notes.

Why?

Grief.

I couldn’t handle jotting down ideas. It’s still too fresh, but at the same time it feels like it’s been a million years without her.

Today is Mother’s Day.

I am ready to share.

I think.

Violets hold strong memories for me. It started with a violet that first belonged to my grandma. The porch off the kitchen of my grandma’s farmhouse was a greenhouse of sorts during the summer months. The light was perfect to grow an assortment of plants, one being violets. One such violet came to my mom when my grandma died from cancer. It was already huge but continued to thrive for another fifteen or so years. My mom had a knack like my grandma. It went uncared for when my mom was so sick and I thought it was past help when I discovered it. I took it to a local gardening store for a second opinion with the hope that I was wrong. Unfortunately, they agreed with me. However, I decided to give it one more try before I gave in to what I thought was inevitable. Do you know what happened? The violet came back! It had more blooms on it than ever. I started many new plants from the grandmother violet. Many of those have been redistributed to family, friends, and former co-workers.

Eventually, the grandmother violet stopped thriving. Its stem arched and twisted like an arthritic finger. It was very old and long past its expected lifespan. Being so twisted, I didn’t notice when the stem broke away from the roots. By the time I did, it was too late. I struggled to throw it out. I rescued it and had kept it going for years. It was a visual reminder of my mom and grandma. I couldn’t lose it on top of all I had already lost. One day, I finally accepted it was gone, and took what was left and buried it, figuring it was better to return it to the earth than chuck it in the garbage. Something that held so much value didn’t belong in the trash, discarded like it meant nothing.

It meant a lot.

I also needed to reframe how I thought about this magnificent violet. It was a life-giving plant. So many new plants came from one plant, much like the offspring from my grandma in my family tree. Friends and family still send me photos when the violets I’ve given them bloom. In this way, I feel like small parts of my family live on. Maybe the memories are just mine, but good memories deserve to keep blooming. Violets in bloom do this for me with fond memories of two of my favorite people.

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These are two of the many violets in my home.

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Now that I’ve chosen to write about my sweet mom, allow me to share a couple more memories.

I remember one summer day when she was mowing the back lawn. My father was still alive and not yet retired. I was also out in back reading and not being helpful. Yes, I know I should have helped more. The mower had stopped. She restarted it and the mower lurched forward with remarkable speed and headed across the lawn. It was a self-propelled model. My mom grabbed it and held on as her little short legs hurried to keep up with it. She regained control so it didn’t careen into a tree. I know I probably shouldn’t be smiling right now, but smiles are better than tears.

Another time she was outside gardening in a flowerbed I had encouraged her to start. I was older and home visiting for the weekend. This memory finds me once again out in back not being helpful. She stood up a little too fast from weeding and lost her balance. With surprising agility, she jumped over the flowerbed and just kept running across the yard until she slowed to a stop. I didn’t know she had that athletic ability in her! The flowerbed was a source of enjoyment for many years. Black-eyed Susans thrived and prospered.

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Black-eyed Susans took over the garden.

When I moved back to my hometown and got a teaching job at my former elementary school, my mom was there to help. I would bring her to school to help set up my classroom at the end of summer. She was my number one helper. Truthfully, she was my only helper. My mom did a good job cutting out laminated materials, putting up bulletin boards, and other small odds and ends that were huge time savers. She was great company. I’d stop by and visit a bit after the first day of school and let her know how the day went. I have countless memories of her being in my corner.

Another frequent memory I have of my mother is how she’d expect me to know answers to her questions without providing me much (any) information. She called me up so many times to ask, “Who’s that person that we saw at that place doing that thing?” I knew her so well. Most times I could figure it out. We talked every day. I miss that a lot. Whereas I can still talk to her, the conversations are not quite the same. I wrote to her in a grief journal for a few years after she died. It provided a much-needed connection that was part of my grieving and healing work.

We took many trips to Door County in summers when it was just the two of us. It was so easy to travel with her. We walked on trails not knowing where they would lead. Thankfully, they were always circular and we ended back where we started. We indulged in cherry desserts at dinner. We savored ice cream at two particular ice cream establishments. Our pace was never hurried. Sometimes we just sat by the water and visited. We watched a couple of beautiful sunsets. One year she got three consecutive holes-in-one at miniature golfing. She didn’t mind the attention it drew. I am glad there are memories of her around every corner when I visit today.

My mom died from metastatic breast cancer. It was painful to watch her worsen for her last final months. Slowly. Irreversibly. All the while, I was recovering from treatments from the very thing that was killing her. Pain for her. Pain for me. The various benchmarks of death inching closer are not things I care to remember. It’s excruciatingly hard to forget images that haunt me. Trauma mixes in with grief. I look far too much like her. Most of the time I consider this a very good thing. I can even see how she looked like my grandma. It’s when I relive memories of my mom during her last days that I’m not so fond of the resemblance.

These gut-wrenching memories don’t help me. They serve me in no positive way. There is no beauty in them. I am never going to be glad for those moments. It’s really hard work, but I am trying to shift to happier memories when the bad ones get triggered. Happy times are the beautiful moments filled with joy that I’m glad to remember. I finally started my list of happy memories I don’t want to forget. They are nothing more than bullet styled ideas that I can add details to later.

Grief is a lot like paper in a paper shredder . . . the original piece of paper still exists but has changed to an unrecognizable form. It will never be the same again. It never can be put back together. Maybe the paper gets recycled and becomes whole once more, but it’s a different wholeness with different print and perhaps a different texture.

Another shredding is always possible.

That’s grief.

I still have moments where I feel completely shredded.

March and April are months that are filled with more grief for me than other months. May historically is a happy month for me. I am always glad when May arrives. Mother’s Day isn’t meant to be sad. It is for many though who have a sick mother, have recently lost their mother, yearn to become a mother, or may even be a mom herself who isn’t well.

Grief shows up on unexpected days as easily as on expected days like birthdays, anniversaries, or holidays. It comes and goes in waves. I can be okay at a funeral or visitation and then almost lose it in a grocery store. Whenever grief washes over me, I need to acknowledge it and let it pass. It washes back out to an imagined sea soon enough. Grief is ongoing. I swim in it, towel off, and am okay until the next wave. I work through grief and try not to get stuck there. No one should stay stuck in grief.

On Mother’s Day, I need to focus on good memories. The disturbing memories I have need to be banished, or at least minimized, so I don’t have a visceral reaction. So I don’t stay stuck. There is no point in remembering my mom immobile and unresponsive in a hospital bed, still breathing but unable to eat, speak, or open her eyes, and already gone in so many ways. When I look at photos of my mom in better days, she is happy. These remind me of pleasant memories. Even if I’m not in the picture, I go back and am happy in that moment again with her. Happy memories are the places I need to linger every day and not just on Mother’s Day.

I close my eyes and let the good memories fill my heart.

I see her stand in the front window where she’d always wave goodbye to me.

I hear her voice and uncontrollable laughter.

I smell the angel food cake she always baked for my birthday.

I taste her special cran-raspberry and lemon jello dessert salad.

If I try hard, I feel my mother’s hug.

I know how much I was loved.

That’s the best memory of all and never leaves me.

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From Fog to Focus

Welcome back! Yesterday, I wrote about how chemo fog can affect day-to-day cognitive functioning for those receiving cancer treatments. Now on to the fog you see when you look out a window and can’t see a darn thing except fog. It’s as if the world comes to a halt, only extending as far as your range of vision.

Literary images of fog usually contain some lurking figure in the distance that’s barely discernible, but is there waiting. A lone figure limps across the isolated barren moor in a horror tale. Fog fills uninviting alleys. Fog mysteriously envelops a person and he or she disappears forever.

Most of us are more familiar with this type of fog. You can’t see your mailbox from an inside window looking out. An outstretched arm in front of your face is invisible. Driving in fog is frightening when you can’t see anything in front of you, and you inch along using the white line at the side of the road as a guide. Too much hope is placed on that white painted line.

Planes are grounded. Ships don’t sail. People are cautioned to stay off the road.

Fog limits visibility.

Or does it?

For planes, ships, and cars, the answer is yes. Fog forces us to slow down. People get so busy running from one thing to the next that they scarcely know what their thoughts even are. They live race car lives going at break neck speed around the same track over and over. These cars go nowhere. You can get off the racetrack. Slowing down gives time for thoughts and ideas to change, develop, and strengthen. It may be a subtle shift from not knowing to knowing.

Foggy days have their advantages. I like them. For me personally, fog has reflective benefits. Fog offers introspection and time to think. When fog settles in around the house and changes plans, I just take a step back and wonder what it is I’m being given the opportunity to figure out. Then I proceed to hunker down and figure it out.

Fog leads us to knowing.

In many ways I found myself in foggy territory while I was on leave from teaching. Eventually, it became clear to me that there were more reasons, better reasons, to retire than to return. I have not known what would unfold at oncology appointments or what choices would be best for me. Eventually, I would get information or a feeling that would sway me in a particular direction. There have been relationships I have been unsure about, but when I looked at repetitive patterns, my choices suddenly seemed obvious. It takes time. I need to sit in the fog for that subtle shift to happen.

Last winter brought my part of Wisconsin several foggy days. Plans changed again, and I just planned an indoor day. There was nowhere to hurry, no “have tos” that day, and more of a relaxed pace. When you know you don’t have to go anywhere, there is no worry and anxiety. You are safe in your slippers inside drinking some green tea with pomegranate with you feet propped up. Maybe the world needs more foggy days.

Fog leads to clarity.

Some years I identify a word as a theme for the year. My word for 2019 is FOCUS. At the end of 2018, I was walking in the arboretum imagining thoughts of the year ahead materializing just a few steps ahead of me on the path. Nature really reveals a lot. I heard words of warmth, feeling, and finally focus. I am not sure what big feelings I will have. Maybe it’s a reminder to rely on my intuition and trust my feelings. I am also not sure of what exactly is the significance of the word focus. I waited for more, but nothing came.

It was a cloudy day, but not foggy.

I decided something would happen to let me know where my focus needed to be.

My focus continues to be on my health and happiness. Both are continued works in progress.

It can’t always be sunshine and blue skies. Rain clears away what a person no longer needs. Winds carry new and old away. Winter gives the earth a chance to rest and eventually renew.

And the fog, whereas it first seems like it closes in and confines someone, it redefines. Fog offers a moment in time that is a respite from reality. When it lifts, it has the potential to offer clarity, freedom, and direction. Let it roll in and sit with it for a while. When it’s ready and you’ve had time to sort through confusion, it will roll out, leaving you behind with clarity on what needs to happen.

Sometimes fog just happens and it isn’t safe to be out.

You can’t find clarity wandering around aimlessly on a foggy moor or driving down a road you can’t see. They are lonely and scary places.

Wait until you can see.

The fog will lift.

Today I feel rather foggy on the inside. I don’t have much “ummph.” I think it’s a good day to get super comfy and listen to what messages I may be trying to send myself. Maybe I’ll take a nap and awaken back in a world of sunshine and warmth. Maybe it’s less foggy in my dreams.

Consider responding:

  • How do you find clarity and purpose when you feel foggy?