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?

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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A Moment in Amsterdam: Fear Alley and Stress

Alleys are narrow. I envision them as dark, lonely places, filled with scary things and unpleasant smells. Forgotten garbage litters the ground. Feral cats and large rats compete for scraps. Alleys potentially are filled with scary people who I’d like to avoid meeting. I wouldn’t be excited about the cats or rats either. They are not safe spaces. No one hangs out in an alley because it’s relaxing.

Back in my youth, I was much more adventurous. I found myself exploring Amsterdam for a few days on my own. I loved it there. The colors of flowers from the numerous flower markets were intense. I took canal rides to tour the city. I lost myself in a VanGogh museum. I relaxed in a beer garden and wrote postcards. The Anne Frank House where Anne hid from the Nazis for two years was transformative. The tourist in me took in everything possible. I may have mentioned in an earlier post that I make an excellent tourist. I even let a stranger buy me a drink and joined his family for dinner one night.

Amsterdam is also known for its nefarious red-light district. I figured it was fine to see during the day. My plan was to turn around if I felt it wasn’t safe. It was an easy walk to that area. I felt plenty safe but was very much out of my element. Gradually, I became aware I was one of the only women in the area not “working.” Women didn’t seem to be outdoors at all. I could not imagine what the area was like in the dark of night. It was time to turn around, however, I did not relish backtracking through what I had seen.

I spied an alley to my left. At the end of the alley rose a tall church steeple. Surely, I would be in a better environment if I took this shortcut. I couldn’t see anyone lurking about there. It was a short distance. It couldn’t be too bad. Weighing my options, I decided to do it. Was it a good idea? Yes and no. I had to use my hands to shield my eyes from windows on both sides that featured more things I didn’t want to see. I walked with a determined pace that was almost a run. I emerged from the dark alley back into the open sunshine and was thrilled to discover the church steeple I had seen was now a building that sold Christmas decorations. Perfect. I found a different route back to my room.

Where am I going with this?

Sometimes walking down a narrow, dark alley may be the only way to find the light again.

From time to time, something scary has to be experienced in order to get to a better place. The scary thing can be unplanned, unavoidable, and unravel life. Fear can stop us from pursuing or reaching our goals. Fear can stop any meaningful movement forward. Fear can keep us unwell.

I have had a lot of practice with fear as someone living with cancer. There has been information to process and digest. Decisions have been made. Many appointments, tests, and results have been faced that I would rather not have had to deal with at all. The process has repeated over and over with revised information, more decisions, and so many more appointments. Life has been filled with uncertainty in the same way as not knowing what may be lurking and waiting in an alley. It seems I’m always adjusting and adapting. I face all these hurdles because not facing them is more fearful than facing them. The distance has been much longer than what I walked in the alley in Amsterdam.

Functioning well in what I call Fear Alley for the long run is too hard. Bodies in a constant state of stress do not recover. Cortisol is known as the stress hormone. Living in a state of chronic stress where cortisol levels are always elevated affects health negatively. Living in fear is like being in survival mode all the time. It’s high stress. Your body, your mind, your soul can’t recover when in a constant state of fear. Those things are sacrificed so the fear can survive.

Chronic stress is the metaphorical mugger lurking in Fear Alley. Stress can contribute to health conditions such as obesity, ulcers, depression, anxiety, heart disease, high blood pressure, and hair loss. A negative relationship exists between stress and the immune system, affecting the way certain cells find and attack cancer cells. Our natural killer cells don’t work as well in a stressed environment. The immune system works better when unstressed. Stress is very handy to have around in fight or flight situations, but surviving in a heightened state of prolonged fight or flight for months and years is going to cause more problems in the long run that will cause a vicious cycle of ongoing stress. Those living with cancer have better outcomes when stress levels are lower. To remain in some type of warrior state where I feel like I am in a constant battle keeps me in a state of stress. I won’t do it. I can’t. It makes my heart hurt. My body physically shakes. Muscles in my gut tighten as if anticipating a punch. The fear and worry spike my anxiety levels.

What if we believed in hope instead?

What if fear and stress were left behind in the alley and images of the alley just faded away forever? You would be left standing in the sun, absorbing warmth, light, and hope into every cell of your being. Your body would have an opportunity to relax and thrive. You’d sleep more soundly and feel assured that things were going to work out. Thoughts and ideas would connect easily in your mind. You’d feel something in your soul that just felt right. This sounds really good to me! For me, less stress means I’m much calmer and more relaxed. My heart doesn’t race. I don’t shake. My stomach is happier. So am I.

Absorbing warmth and hope into every cell means leaving stress behind. How does this happen? Meditate. A few breaths make a difference. Start with inhaling fully for three or four counts and then slowly exhale for the same number. Repeat this four or five times. It’s a mini-break and gives your body an opportunity to reset. Go for a ten-minute walk if there’s time. You’ll combine deep breathing and get a few minutes of exercise. Other ways you can lower stress are to spend a few minutes writing in your gratitude journal, think of something to make you laugh, or make a quick phone call to a friend. Use affirmations to set the positive, hopeful, no stress mindset that you seek.

Hope isn’t found at the end of a dark alley. It’s found in all the little moments where a thought makes you smile, you spend time doing something that brings you joy, or you take that ten-minute walk. All those moments add up. Hope is found in the heart. Ultimately, this means hope could even be found as you walk through what is fearful. Somehow. Maybe it’s just a small molecule of hope, but it grows as you inch toward the end of the alley. Hope is always within.

Don’t let fear crush hope.

Hope makes living with cancer so much easier than trying to live with it from a place of fear. It’s like permanently living in the Amsterdam flower market or having the Van Gogh museum completely to yourself. Every part of your life feels better with hope. There may be alleys to walk through that are unavoidable. I wouldn’t recommend strolling down any just for the experience. Hope is obtainable without an alley walk. I’d like to think hope is also unavoidable.

We all need to hold on to hope and not let go.

We all deserve the sunny parts of Amsterdam.

All the time.

 

Consider responding:

  • When can fear be the only path to lead you to something better?
  • How can you approach fearful places differently and come from a place of hope?

 

Chemo Brain

Chemo fog is also commonly referred to as chemo brain. It is like weather related fog in that a person just can’t see clearly or get much done. You go through the motions, but life lacks luster. You can’t shake being tired when you wake up. Fatigue of the mind stays with you all day. Other symptoms include difficulty concentrating, trouble remembering conversations or the right word, and taking longer to complete projects or tasks. A serious illness can also bring on extra stress, depression, anxiety, and insomnia. All of these can affect a person’s cognition. Although I never really felt confused or had trouble remembering anything, I just had a general mental fogginess that I couldn’t quite identify. I was slower. You get used to it and just figure it’s part of the collateral damage of treatments.

Then one day, the chemo fog lifted. I remember the morning about six months out from what I thought was my final chemo back in 2012. I woke up and my mind was completely clear. It felt like information traveled faster on neural pathways. It happened again the next morning. By the third morning, I was convinced that I had met one more benchmark that life was returning to my normal.

It hadn’t, but the chemo fog was gone. Even with continual treatments over the past three plus years, I never had that sense of slower processing return. I am grateful that my thinking is as clear as ever.

Many people deal with chemo fog every day. What can a person do to help minimize chemo brain?

Stay well organized.

Make lists and follow routines. Writing important ideas down will ease any pressure to remember so much on your own. Try to keep all your notes in one place so what you’re trying to remember isn’t scattered about in several different places. Use a daily planner, your phone, or an ongoing notebook of lists. A notebook or health journal is also a good place to track chemo brain symptoms since you may discover patterns when it seems better or worse. Medications or specific situations may also affect your memory. Following a routine will help you with day-to-day schedules. Do you always pay bills on a certain weekday? Is pizza night every Tuesday? Do you have a grocery list of staple foods that you always buy? Are there specific days that you use for specific appointments? I always set up acupuncture appointments on Mondays. I spaced an appointment that I made on a Wednesday (even though it was written down) because I just didn’t go there on Wednesdays. I do well with routines, not so much with changes in those routines.

Get plenty of rest and sleep.

It’s said that driving when you’re tired is as dangerous (or more dangerous) as drunk driving. I know people who haven’t had any cancer treatments who are unable to remember much because they simply do not get enough sleep. Lack of sleep slows your brain in processing information. Sleep is important all the time, but it’s especially an important part of healing and recovery during and after cancer treatments. Appointments, errands, and work may go more smoothly if you complete some activities in the morning when you are fresher and have more energy. I wanted to walk the other evening with a friend and was simply too tired to go. I was grateful she cancelled and now I know to schedule those activities earlier in the day.

Don’t do too much.

Focus on one activity at a time. Ask for help from family and friends so you can conserve mental energy for more enjoyable endeavors or your work if you’re working. Multi-tasking doesn’t work well for someone experiencing confusion with an unreliable memory. If you know you need a whole day or two after a treatment to focus on the basics of the basics, that’s fine. There is no need to push yourself.

Play brain games.

I like word games and brain teasers. I did a lot of word puzzles and critical thinking exercises with my students. My mom and I would do jigsaw puzzles together. A few years ago, I bought the memory game Simon more out of nostalgia than any other reason, but it’s a great way to work short-term memory skills. Reading is another way I continue to work my gray matter.

Make healthy choices in terms of eating and exercise.

Veggies are better for brain health than sugar. Moving around is good for both mind and body. It can help decrease fatigue brought on from treatments. This may be a good time to put the word out to friends who have offered to help that a casserole or dinner with fruit and salad would be appreciated.

Stay tuned for a special Monday post where I continue with a few thoughts about the atmospheric fog that limits visibility. It’s a bit shorter, yet, metaphorical and worth pondering.

Consider responding:

  • What has been helpful for you or someone you know who has had chemo brain?

 

 

Categories: Change

 

Tags: fog, clarity, focus, chemo fog,

 

 

 

What Objects Tell the Story of Your Life?

This type of question fascinates me. It’s a wonderful opportunity for self-reflection and discovery. The answer can change over time as different significant events are experienced, and even as major interests come and go. When I first started thinking about storytelling objects, the number three popped into my mind. Three objects was a good number. Three objects soon became extremely limiting. Then I tried to compartmentalize my life into three sections: past, present, and future. I could have several objects within each section. The future section posed the biggest problem. A crystal ball is not one of my objects. Time as some sort of construct to organize my story helps, but something is still missing here, too. Finally, I fell back on simple self-reflection to identify objects to represent stories that collectively tell a little bit of the story of my life.

Object: Lisa and the Grompet (book)

Story: Independence

There have been countless times where I’ve unearthed a memory and thought, “Ah-ha, so this is where it started.” I have found letters I wrote to my mom while I lived in Scotland declaring how I might as well go places on my own so I could see as much as I could and do what I wanted. I went all over on my own and thought perhaps this was where my independent streak was born. Being in Scotland for a year, however, was already a story of independence.

But it goes back further. Both my parents always valued education as a way to be independent and for me to stand on my own. Good call, parents. I place a high value on education for many reasons. It continues to give me a lot of happiness. It gave me wonderful years in a career I loved. Being independent enough to support yourself and get to do what you love can’t be matched.

But this story still goes back even further, quite a bit further. I remember my dad dropping me off for Sunday school for the first time. We were early and no one else was there. A little boy showed up. My dad wanted to stick around to make sure I was okay, but I shooed him off, telling him I was just fine and had a new friend. He reluctantly left.

For a long time, I thought this was the first memory of me asserting an independent spirit, but no, I can trace it back further still. As a young child, there was this book I loved to check out repeatedly at the public library – Lisa and the Grompet. It was about a little girl Lisa who was bossed around by everyone in her family.

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Lisa and the Grompet (written and illustrated by Patricia Coombs)

 

She knew what she needed to do.  No one had to keep reminding her. One afternoon she discovered a little grompet creature outside who needed someone to take care of it and tell it what was what. Hmmm . . . I felt a lot like Lisa and never liked being told what I should do. Yes, this I think is where my story of independence subconsciously took root. Maybe I was born knowing I was okay on my own. That would backtrack the story even further. Who knows? I need people like we all do. What I am saying is this book had an effect on me and there has been an identifiable pattern that turns up at other times in my life.

Object: Photos

Story: Family

Photos are an easy choice. I love going through albums and remembering favorite moments with my family. They are a collective timeline of my life, so it’s really not possible to choose just one. Together they tell my story. There are photos of birthdays, holidays, vacations, achievements, picnics, days up at my grandma’s farm, pets, and many special occasions. Every year there was a classic photo of the first day of school. Family experiences and values shape so much of who we become. Looking back at those photos helps me remember those times. Photos of family (and friends who are family) are good storytellers. Perhaps my enjoyment of past photos even points to some of my present interests in photography. Important ideas keep showing up.

Object: Pencils

Story: Teaching and Writing

IMG_1727 I’ve written over twenty years of lesson plans with pencils. Hundreds of kids have used thousands of pencils to demonstrate many levels of learning and understanding. They have borrowed and kept many. Too many. I should have taken out stock in a pencil company. I still prefer a yellow Ticonderoga and get a bit of a rush when I begin to use a newly sharpened pencil with a fresh eraser. I’ve filled diaries and journals as a child and adult. These are great time capsules of years, trips, and things I thought terribly important at the time that are now preserved. Feelings that I never wanted to share anywhere else I could capture with words just for me so I’d remember. Many writing endeavors have been written on my laptop, yet that image of a pencil is a perfect representation for the plans, creativity, and story involved in each of them. Pencils create powerful stories. Pencils don’t have the story, but they are the way the story oozes out, word by word, until something complete and amazing is created.

I’m not sure if it’s true or not, but I’ve heard a single pencil can produce 45,000 words. I don’t doubt that one pencil can create thousands of words. Knowing an intangible quantity awaits inside makes pencils one of the truly powerful and magical objects in the world.

Object: Cells

Story: Cancer

This story sucks.

I remember calling my mom after I had gotten my phone call with the news. She was upset. Then I headed over to her house to show her I really was okay.

I remember the day I told my students I wouldn’t be finishing the rest of the year. I explained I had been seeing a lot of doctors and they had found something wrong with some of my cells that weren’t working the right way. The name for it was cancer. My doctors had a really good plan for me but it meant I had to be away from them. That isn’t exactly where this story started, but it’s where it became common knowledge to a big part of my world beyond my immediate family and a few close friends.

Now, it continues. I marked my 100th treatment at the end of February. I don’t really have the words to express how that number makes me feel. A lot of conflicting emotions overlap in a messy jumble. It’s a juxtaposition of toxicity and life. I’ll keep on keeping on.

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Image credit: pixabay.com

I really hate including this as part of my life’s story.

I’ve argued with myself trying to decide whether to include this part or not.

Me: Maybe I shouldn’t.

Also Me: How could I not?

Me: Don’t give in to it as a factor in your life.

Also Me: Too bad, I really don’t have a lot of moments where I feel truly away from it.

Both of Us: Cancer sucks.

I have worked so hard not to let it define me or become part of my identity. Appointments, treatments, side effects, and other related choices have changed the way I live. I needed to retire. Teaching defined me perhaps more than it should have, but I feel that is something almost innate in my being.

When I decided to blog, I knew sharing about how I’m trying to live well while living with cancer would connect cancer to my life more than I wanted. It’s not a story I wanted to have, but it’s part of my story nonetheless. The image of the pencil also blurs into this story. The teaching story also overlaps. Once again, important ideas keep showing up. I can choose how I tell it by the way I live which is why I’ve chosen to focus on wellness. I have a lot of wellness in me. I want people to see that and see me as me.

Object: Path

Story: Rejuvenation and Future

Paths surrounded by trees are some of my favorite places. Trees re-energize me.

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Path at The Grand Hotel Resort in Point Clear, Alabama.

I am relaxed spending time in nature. From out of nowhere, solutions show up for problems. Something creative happens. Inspiring ideas come to me, whispered by the breeze. The fresh air makes me feel fantastic. Depending where I am, I see turkeys, deer, or cranes. I can’t always see where my path leads and that’s okay. Sometimes I know where I’m going; sometimes I don’t. I’m going somewhere and I choose to believe it’s good.

Many objects make up the story of our lives. Books, photographs, pencils, cells, and paths make up part of my story. These may not be the best objects to choose, but they are what I’ve chosen here. For now, there are many other books to read and photos to take. I have much to write whether with pencils, pens, markers, or keyboards. My story is still being written. Creating an environment where healthy cells thrive and abnormal ones don’t is an important focus. I love being in nature walking familiar paths or exploring new ones.

Ultimately, my story is one where I find a way. Always.

Consider responding:

  • What objects come to mind that could tell part of the story of your life?
  • What special objects hold important memories for you?

Empathy and Cancer

Empathy: the ability to understand and share feelings with another.

I recently read a blog written by an older woman who had a cancer scare that she had to deal with on her own. Her husband had passed away from cancer and she had had enough of it in her life. Her feelings are understandable. Two mammograms directed her to an ultrasound. The ultrasound triggered a biopsy. Her timeline read very much like mine did. One test after another was given with heightened urgency. Everything was fast tracked for this woman because the doctors were worried about the outcome of tests. She didn’t know how she would do cancer alone. Thankfully, this woman did not have breast cancer. Of course, I am glad it turned out this way for her.

She said her experience gave her empathy for people who are alone.

Hello?

I’m sure this fellow writer is a lovely woman. Supporting someone through illness is hard. Losing him/her to that illness is excruciating. I do not diminish her pain because I know it’s real. I can empathize with her because I have lost people in my life. Cancer takes too much.

I am confused though why empathy needs to be directed toward people who are alone. Is aloneness somehow lesser than togetherness? Do my experiences when I spend time with friends, family, or a group of people give me empathy for people with partners? They do not. I may at times feel a little thankful to be back home and away from some of the stimulation and unwelcomed opinions, but I do not have empathy for people in a relationship. It sounds absurd when the shoe is on the other foot.

Somehow the comment rubbed me the wrong way. It seemed more bothersome to me that she felt empathy for people who are alone than for people who have cancer. I just kept scratching my head. It felt like pity or that someone was feeling sorry for me. I don’t want someone’s sorrow. Her remarks made me feel like she was saying, “Thank goodness I didn’t have cancer and the double whammy of being by myself!” This is more of an inner reflection than what was likely intended. I guess being on my own is a bit of a touchy subject for me, mainly of how I feel society perceives it as something less. I feel like I’m regularly defending my status. Sometimes I feel forgotten. Having cancer and being on my own really isn’t so hard. For one thing, I am reliant on myself and can organize appointments, etc. in a way that works best for me. I don’t have to check with others when I need to change my plans. I know how I feel and I don’t need to try to convince or explain those feelings to someone else. Sometimes it’s hard. Sometimes I wish I had a little more help and didn’t have to figure everything out. And I do have help. I have plenty of support. I ask for what I need. I feel connected to so many and have nurtured meaningful relationships. Technically, yes, I am doing cancer on my own, but I’m also not. It’s complicated.

“Empathy is simply listening, holding space, withholding judgment, emotionally connecting and communicating that incredibly healing message of ‘You’re not alone.’” ~ Brené Brown

Enjoy a short clip from YouTube where Brené Brown explains more about empathy.

I am not sure I’ve done all those things in my reaction to what I read. This post itself has been difficult for me to write. I have felt angry and questioned those feelings. However, it is completely okay, in fact it is fine, more than fine, for me to feel anger. I feel misrepresented. I feel there are indirect implications that are at my expense while someone else is expressing gratitude. Gratitude is not gratitude if someone (or another group) is put down in order for another individual to feel grateful. Nor is it empathy.

Empathy means a lot to a person whether they have someone at their side or they are on their own. Empathy is a universal yearning we all need and we all have the capacity to give. You are putting yourself in someone else’s shoes. It still isn’t quite the same because at the end of the day you put your own shoes back on. Still . . . there are moments when you almost get it. The important part is that you try to get it. I have beloved friends who try to get it.

One of my goals with this blog is to change perspectives on cancer, particularly advanced stage cancer. When I read something that feels a little, “Oh, that poor person has cancer and is alone,” I don’t like anything in that sentence because that feeling of pity permeates whatever sentiment is trying to be conveyed.

It doesn’t feel good.

What feels good is being welcomed to a group. I’d rather hear a compliment about something amazing I accomplished instead of a question on whether I went with anyone while achieving it. It feels good to be appreciated for my other qualities. It feels good to be included in things. If I’m unable to do something, then I may need to pass, but I appreciate being included. I like it when people remember things about me and respect my thoughts and opinions. I like it a lot when I’m not constantly asked about my health and truly treated like one of the gang. A small bit of thoughtfulness goes a long ways. It is how I believe we all can treat one another respectfully and compassionately.

Empathy in action is a lifestyle choice.

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Taken at the UW-Arboretum in Madison, WI.

It’s possible I’m confusing empathy with sympathy, but I don’t think I am. In fact, I think some other people are. I certainly don’t want anyone’s sympathy or sorrow. It belittles and demeans if directed at me because I’m living with cancer. I want an even playing field. Don’t give me something or take something from me because of my health. Don’t give me something or take something from me because I’m single. I didn’t ask for your sorrow or pity. I’ve asked for your encouragement, support, and friendship. These are the things I offer.

There is something else you can give me: caramel. If someone were to offer me a caramel, I would not say no. Really good caramels are an entirely different story. It just might be an edible form of empathy.

Empathy is feeling as sad for a friend as if the event were happening to you. It’s understanding your friend is in a lot of emotional or physical pain. Empathy is understanding a perspective that’s the polar opposite of yours. Parents and teachers demonstrate empathy every time they know that something that isn’t a big deal at all really is a huge deal to a child. You show empathy to me when you understand that I may cancel plans, not feel one hundred percent, and don’t ask me a laundry list of questions. It means a lot to me when you share something hard in your life rather than me always explaining my latest hurdle that I try to embellish with a little humor thrown in for good measure.

Empathy is not making comments along the lines of “It’s too bad you had to get cancer.” Yeah, I just don’t know what I was thinking when I was in the cancer store. It isn’t empathetic to tell someone what he/she feels. Neither is telling someone what he/she needs to do to fix what is deemed not right (health, job, loss, etc.). Empathy is not putting someone down or saying things could be worse or that he/she should feel grateful. The words “at least” aren’t used at all. Please don’t tell me to live life to the fullest because tomorrow I could get hit by a bus. What many people don’t understand is that I’m running from that stupid bus every day. These things seem obvious to me, but I’ve heard them all. Perhaps the intention isn’t to show empathy, but to show something far less kind. I can’t figure it out.

And empathy definitely is not knowing what it might be like to have cancer and be alone because you had a scare and everything turned out just fine. You put your own shoes back on and walked on.

Empathy is something we all need and we all have the ability to give. At best, we understand what it’s like to be scared, perhaps terrified about our health and our future. We understand all the “what ifs” that run wild in our thoughts. We understand that disease can be a very lonely place to live. We can relate to one another that our upsetting news, event, or circumstance may be completely different from another person’s struggle, but that they are the same in that they are unsettling, frightening, and possibly very lonely feelings. We understand people are doing the best they can with what they have. Empathy connects us to one another. Through empathy we can share with and support one another. IMG_1836

I can empathize with those feelings.

I am not alone.

You are not alone either.

Consider replying:

  1. Where have you seen empathy alive and well in your life?
  2. How do you best handle situations when someone is not empathetic?