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?

Exercise and Nutrition

A quote from the 2014 documentary Fed Up concisely sums up how diet and exercise must be thought of as partners in health: “You can’t diet your way out of a sedentary lifestyle. You can’t exercise your way out of a bad diet.”

It seems likely that someone who watches what they eat probably also has an active lifestyle. Eating right and moving around just helps you feel better and fuels your fun. Raw or steamed broccoli is better than a bag of chemical chips. Taking a walk around the pond is better than sitting on my duff watching TV or even, ahem, blogging.

Exercise

I am not athletic. Attempts at running were always short-lived and caused me minor injury in the past. But I love to walk outdoors. Going to the UW-Arboretum or Pheasant Branch Conservancy takes care of my heart, lets me decompress, and promotes creativity. Once I build up a little endurance, I also enjoy biking. Gardening, yard work, mowing the lawn, shoveling snow, and anything functional in the line of caring for my home all count and provide that undeniable feeling of self-satisfaction.

Moving needs to become second nature. My Fitbit has helped me monitor how much I move (or don’t move) on a daily basis. Before that, I wrote down how many miles I walked in a journal. It’s important to find a way to be accountable. A while back I read that making goals wasn’t enough, but a person needed to take goals a step further and make plans. Wanting to walk more is all very nice. Scheduling to walk in the arboretum helps turn the very nice into a reality. Saying I’m going to bike more means nothing if I don’t make sure my bike is ready to go and I make the effort to do it.

Hiking is one of my favorite activities. Hiking gets me out in nature with fresh air, blue sky, and lots of trees. Getting lost in my thoughts and really giving myself time to think away from other distractions always provides me with new insight. There is something amazing that happens in my brain when I pair physical and mental work together. My brain works better and thoughts are clearer. Physically, hiking has a long list of health benefits including improved cardio and muscular fitness, lowering risks of high blood pressure, type 2 diabetes, high cholesterol and triglycerides, and also lowering risks of cancers like colon and breast cancer. It’s a great aerobic workout. Hiking also can provide better sleep quality, reduce depression, and lower your risk of an early death. Being active in general tends to lower the risk of death. Honestly. How not surprising. Psychologically, hiking can provide feelings of relaxation and well-being. Sunshine, fresh air, trees, and feelings of accomplishment all feed into better mental health.

Exercise is important for everyone, but keeping it as part of a daily routine is one of my priorities as someone trying to live well with cancer. There definitely are times I would rather sit through a dental cleaning or a foreign film without subtitles than exercise. When I’m already feeling fatigued as a side effect from treatment, it seems crazy to purposely choose to do something that will make me feel more tired. Strangely though, this is not the case. Exercise combats fatigue. I feel tired after exercising, but it’s a different kind of tired than fatigue. I have more energy after I recover from however I’ve chosen to exercise. The energy sticks around a while. Regular exercise has also been connected to increasing survival rates for women with breast cancer. I want to stay alive, hence I exercise every day.

What about when fatigue isn’t the problem? What if it’s physical pain that’s preventing movement? I experienced this the other weekend with aggravated inflammation and muscle soreness from an injection that caused deep hurt with every step. I fought through most of that day trying to find a way to keep fun plans I had that night to go to a concert. I missed my daily workout because I couldn’t exercise through the pain. I could barely walk. I don’t think exercising when you hurt is a safe idea. Pain is a solid stop sign. The up side to my story is I was prescribed some strong medication to help make my evening of fun possible. I still hurt but there were moments I forgot. The down side is the meds made me puke profusely by the next evening. It took days before I moved well again. I’m not pushing activity and I’m definitely not taking any more of those pills. My body will let me know what I can do.

How much exercise does a person need daily? The current guidelines from the Department of Health and Human Services recommend that healthy adults get at least 150 minutes a week of moderate aerobic exercise (activity that produces a sweat). That’s a mere twenty-two minutes a day when broken down daily. Strength training is suggested at least two times a week. Click here for a short article provided by Mayo Clinic on these recommendations.

Nutrition

After getting through six months of initial chemotherapy in 2012, I needed to make changes in my diet. It’s still hard because of my love affair with sugar. Ideally, I should probably also be a vegetarian, but I love cheeseburgers too much. I try to keep these in check and enjoy them when I eat them. For me, a healthy diet consists of less meat, less processed foods, no alcohol, less sugar, more plant-based proteins, and more fish. More of a plant-based diet in general is a healthy winner. I order a steak about once a year on vacation, but even that is waning because of how I feel after eating it. I eat a lot of fish. My breakfast used to be a fairly tasty blend of five fruits and vegetables in my Nutri-bullet. What I thought was extremely healthy was also providing far too many natural sugars and unknowingly raising my A1C. Now I’ve switched to breakfasts that usually consist of eggs, half an avocado, and one fruit. The avocado cuts the natural sugar from the fruit.

One area in nutrition I’ve been more successful in is eliminating dairy. I miss milk. I love milk. However, it contains casein, a protein that promotes cancer growth in any stage. I know some who have read widely on this and disagree on whether that is true or not. My current feeling is I really don’t have much wiggle room to disagree. It is potentially more beneficial to me to avoid milk than to drink it. There is no dietary reason to consume milk produced by another animal. Calcium can come from plant-based proteins such as quinoa, brown rice, oatmeal, white beans, kale, and collard greens. With all that said, I still will enjoy ice cream now and again, maybe a little more than I should. I like string cheese. I slip every so often and have cereal with milk. It tastes awesome, but it can’t become regular diet. I grew up and live in Wisconsin, also known as The Dairy State. Clearly, there is room for improvement in cutting out more foods made with milk. Did I mention I really love ice cream?

I have also added an Omega low-speed, masticating juicer to extract all the vitamins, enzymes, and minerals in their purest and rawest form to provide the highest juice yield. Kale, spinach, celery, cucumber, and green apples make the most gorgeous green juice I’ve ever seen, and it’s also very refreshing. The color green is both a healing and energizing color. Green juice is a great way to send oxygen and needed nutrition to unhealthy cells. Unhealthy cells don’t like oxygen. Too bad, I’m very fond of oxygen. I get to choose, not the other way around.

Both exercise and nutrition need to work in tandem together to get the best results. I am a firm believer that everyone can do something. One person’s exercise or nutritional needs are different from what someone else needs. For example, most people are supposed to get what vitamins and minerals they need from eating a healthy diet and not need these in supplement form. I take a lot of supplements because treatments make it harder for my body to absorb some things. I also still feel a bit down when I look at people hitting the pavement or trails on their bike who look like they are practically flying. I have to work hard to achieve even a slow speed. It takes time for me to build any true endurance. I do the best I can.

Click here to read the 2015-2020 Dietary Guidelines provided by Mayo Clinic. I don’t agree with all the recommendations, but it does force me to justify my choices. As I mentioned in an earlier post, sometimes I feel like there is so much conflicting information on what healthy nutrition means that it’s hard not to drive myself nuts. I look for overlapping ideas from multiple sources.

I try to make the right choices for me in how I move and what I put into my body. I can’t just do one or the other to be healthy. I can’t compare my needs to anyone else’s either. Everyone has individual preferences, routines, and needs. I do learn a lot from others who share what they know when I ask for their wisdom.

My hope is that we all find a way to eat well and move well.

Consider responding:

  • What are some of your favorite healthy foods?
  • How do you enjoy moving?

Trust Your Gut

There is wisdom in the old adage to trust your gut. It tells us when something is off – be it a person, situation, or our bodies. It has been quipped as our second brain and more and more people believe the gut plays a role in our emotional health. I think it’s wise to listen to your gut. I dealt with IBS symptoms for years prior to a cancer diagnosis. Forgive me if I share too much. True, there were trigger foods and emotional triggers that caused issues. I saw many specialists that only ruled things out and never could explain why my stomach and digestion were such a mess. Other than a colonoscopy to rule out colon cancer, no one ever thought cancer was truly at the root. And it may not have been, but my gut was certainly working hard to tell me something was wrong. I made minor changes to my diet, but wound up just trying to control symptoms since I never got a real explanation.

Interestingly, after the diagnosis, the IBS symptoms all but disappeared. Sure, my diet is much different now, but I find it a very interesting correlation. Trust your gut. Perhaps it’s bringing your attention to something physical or emotional. Listen.

I am not a dietician, a nutritionist, or a health coach. I just want to share a few things I’ve learned over the past few years. Please follow-up with research of your own and consulting health professionals before making changes to your diet.

Eating a plant-based diet is one of the easiest ways to naturally change your gut environment. Many fruits, vegetables, and whole grains contain prebiotics that keep the large intestine happy. Plants that are higher in fiber content help the gut. It has something to do with the fructans found in fiber rich foods. Fructans are a type of prebiotic. The higher the fructan level, the happier your gut biome. Fresh, whole foods are the recipe for a healthy gut biome. If you choose fresh fruits, veggies, legumes, beans (pinto, kidney, white), and whole grains, you’ll have it covered. Artichokes, raspberries, and asparagus are also good sources.

Legumes typically are low in fat, have no cholesterol, and contain insoluble and soluble fiber. They are high in potassium, iron, magnesium, and folate. General foods in the legume family are lentils, chickpeas, beans, soybeans, and peanuts. Your gut likes legumes. I personally steer clear of soybeans and therefore any soy products due to associations with estrogen production, but I leave it to individuals to research and make their own decisions regarding soy, beans, and any of the suggestions I may make. What’s right for me may not be right for you. It’s always possible I have misread a fact even though I’ve made every effort to double and triple check.

Beans confuse me. Mark Hyman is the author of Food – What the Heck Should I Eat. He believes beans have benefits, mainly as resistant starches. He says the fiber, minerals, proteins, and other nutrients found in beans can be gotten from other food sources. He also writes that beans are to be avoided if you have cancer. I’m left confused here. There are always conflicting statistics, studies, and recommendations about foods. As stated above, beans can help contribute to a healthy gut. There are times I feel that I’m doomed whatever I eat. I still don’t know what the heck I should eat. Then I slip and have a delicious bowl of ice cream.

Broccoli probably wins the prize for the most beneficial food ever grown. I can’t stand it, but I’ve eaten it diligently. Now, I’m on a bit of a broccoli break. It’s easy enough and you can’t beat all its benefits. It’s just one of the mighty cruciferous vegetables that decrease the risk of several types of cancers (breast, colon, melanoma, pancreatic, and liver) and improves bone health. Cauliflower, kale, turnips, and Brussels sprouts are other cruciferous winners.

I have a lot to learn about whole grains. For those in the gluten-free camp, grains aren’t for you. The great thing about whole grains is they are packed with fiber and carbs. When these make their way to the large intestine, they are broken down there and promote the growth of beneficial bacteria.

Plants rich in polyphenols are also helpful to the gut biome because they decrease inflammation in your gut. Polyphenols actually aren’t absorbed efficiently on their way to the colon, which in this case is a good thing, because it means there are more to be digested by bacteria in your gut. Good sources of polyphenols include blueberries, grape skins, broccoli, and onions. Almonds also are a good source, as well as cocoa and dark chocolate. Finally, no guilt for all the dark chocolate I eat! Red wine and green tea are liquid sources for polyphenols.

There are lots of diets out there claiming to achieve wellness for your body – low carb, no dairy, no gluten, no sugar, no meat, vegan, high protein, high fat, etc. The list goes on and on. Some have merit. I am waiting for the high chocolate diet since dark chocolate has already been established as a very good thing.

Bottom line: Eating a diverse diet that is mostly plants, limited in processed meats, and low in sugar is one that will keep your gut happy and that keeps YOU healthy.

I worked with a naturopath in the fall of 2016. It turns out my gut ecology wasn’t helping my body absorb nutrients even though I had made many diet changes and added supplements to my daily intake. This was less than thrilling news to hear that I’d been getting little if any positive effect from years of faithfully ingesting numerous pharmaceutical grade supplements, not to mention the financial investment involved with that commitment. Apparently, chemotherapy and some medications can drain your body of certain nutrients. The solution was better gut ecology, attained through a plant protein based drink that was dark yellow, thick, and awful tasting. I called it sludge. Strangely enough, I came to count on it as a support. It gave me needed nutrition and repaired my gut. I continue to drink it from time to time since my gut will likely be in need of extra support for a long time.

Gut ecology and health is a burgeoning field of science. No matter what the ailment, it seems improving your gut biome is a place to start recovering better health. Thousands of species of microorganisms make the gut home sweet home. These microbes help maximize nutrient absorption and support digestion. They even can contribute to a better immune system. Both these functions are vital to a stronger, healthier me, so if I need to drink sludge every day, I’ll do it happily, because a body that is functioning creates an environment where cancer cells are not welcome. Healthy bacteria in your gut actually form disease fighting armies. Foods like bananas, broccoli, blueberries, beans, and fermented plant-based foods are natural ways to create this bacteria. I give my gut a boost however I can and also take probiotics.

Michael Pollan is an author and food connoisseur who has taught me a lot about healthier eating. He has three simple rules: Eat Food. Not too much. Mostly plants. For further reading, I recommend In Defense of Food (or any book by him).

Trust keeps coming up over and over again as an underlying thread in many posts. It affects how you relate to yourself, to others, and how you function in the world. Trust affects what you eat and how much you eat. Establishing healthy boundaries has a lot to do with trust. I believe there is a direct cause and effect link between happiness, health, and trust. Examining each of these is a huge topic. For now, I’ll keep it simple with a basic guideline to listen to what your gut has to say. Trust yourself. Trust your gut.

Lucky Leprechauns and Health

Many years ago, a middle-aged Irish woman started off a bus tour of Killarney and the surrounding area with these words, “When God made time, He made plenty of it.”

If you don’t hear her accent, you’re reading it wrong. Go back and reread it with a lilt that would make a leprechaun jealous. Her words still echo true twenty plus years later.

Too many of us rush around trying to get more and more done, believing that quantity is better than quality. If we could SLOW DOWN a little, we would find there is more than enough time for what truly matters – things like love, joy, learning, and truly working to make the world a better place. At the end of the day, these are the important things. If you feel like you never have enough time, you are trying to do too much. Taking care of yourself and your health may take a back seat. Important things are likely being neglected or pushed off until later. Later never comes. No one can keep doing everything all the time. We need sleep, peace, and joy.

There is plenty of time.

Make changes.

We all have the same number of minutes in a day. If working out is a priority, time opens up for it. If more time is needed to read to or play with your children, you will find it. If you sit watching hours of television or mindlessly checking various social media accounts, well, there goes your time. We all have the same amount. We all use it differently.

I could make more time to clean my home, but I don’t and I don’t care. Not a priority.

I hope I never become allergic to dust.

Slow down.

I believe it’s healthy to slow down. Slowing down lowers stress and increases happiness. How do you do that if you want to slow down a little or a lot? I’ve asked myself these questions:

What is it that I really want to make time for?
Where do I feel like I waste time every day?
How can I make my life easier?
What happens if “x” just doesn’t get done for a day or two?

My answers revealed my priorities. Too much time is wasted on various screens throughout the day. Making a list keeps me more focused. I used to find lists too controlling, but that leads me to the answer to my last question. If something doesn’t get crossed off the list or completed, I really don’t care.

Leprechauns have always struck me as happy, healthy, and lucky. I don’t know how they spend their time, other than mischief-making and making tiny boots. They know a secret the rest of us are trying to learn. The Irish woman giving the Killarney bus tour knew the secret.

Why are leprechauns so happy?

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I think it’s a combination of the whiskey, jigging, and being around so much healing green. I love all three of these, however, these days I’m limited to jigging and loving green things. No worries, I can still channel my “inner whiskey” when I need it. Don’t ask me what I mean by that because I’m not sure. I just do it. Leprechauns also are so small that joy and happiness (and maybe a little mischief) just oozes out because it has no other choice. We all need to have that leprechaun spark ignited within us.

How can we be just as lucky as leprechauns?

Some people are just thought to be luckier than others. I am really lucky at getting awesome parking spaces. But there are things to do to improve your chances. Believing you are lucky increases your chances of getting what you want. It changes your perspective. You become more receptive to opportunities around you. That has the potential to change health opportunities and outcomes. I think the same is true with time. When a person thinks there is no time – there isn’t. When a person thinks there is enough time to do something – somehow time opens up so such and such magically gets done.

I have heard that lucky people are clear on their goals and voice them. A leprechaun is very clear on his goal to hold on to his gold. No fancy or flowery language. I figure a leprechaun has two main goals:

Keep its gold.

Be a leprechaun.

How can I find my gold?

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What is my gold? My health. I need to feed it good food, fuel it with fun exercise, and surround myself with people who love me. I need to make time for what keeps me happy and healthy.

Lucky people also are proactive. They put themselves in settings where what they seek is present. They go to fundraisers to meet doctors and researchers. They go to writing conferences and send query letters to agents and publishers. They audition for plays, sing on “The Voice,” and run for public office. Lucky people talk about their interests and visions. Asking questions is a sign of being proactive because you get answers and make progress. Here I am a little stumped as to how a leprechaun making little shoes and boots all day relates to their goal of protecting their gold. Share a theory if you have one.

My grandma’s ancestors came from Ireland. She always had a twinkle in her eye and personified some of the mischief leprechauns are said to have. Grandma lived until she was 98 years old. I think she knew whatever the Irish woman from the bus tour knew.

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My grandma had more than a twinkle in her eye. She sparkled all over.

The truth of the matter is a leprechaun doesn’t need a pot of gold. He’s never using it. It seems a sign of greed for those who want to steal it. If I ever meet one, I wouldn’t ask for it because I’d be tricked out of it anyway. I wouldn’t even ask for shoes. Instead I’d ask for a bit of healing magic. They are said to be magical and covered from head to toe in green. Green is healing. Healing is golden to me.

So, what have I learned about leprechauning?

  • Green is a wonderful color.
  • Doing a jig is non-stop fun.
  • A leprechaun has plenty of time.
  • We all have plenty of time.
  • A leprechaun is lucky because it believes it’s lucky.
  • It knows what it wants and it is clear on its goals.
  • A leprechaun is proactive.
  • It doesn’t even need its pot of gold.
  • Its gold is found within and that really is what we all are after.
  • We all can be leprechauns.

It seems fitting to end with a traditional Irish blessing:

May the road rise up to meet you.

May the wind be always at your back.

May the sun shine warm upon your face.

May the rains fall soft upon your fields.

And, until we meet again,

May God hold you in

The palm of His hand.

I can’t believe I have to say this, but if you didn’t say the Irish blessing with an Irish accent, you’re still doing it wrong. Go back and do it properly.

And may you make your own luck.

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Individualized Survivorship

I was half listening to a show on TV many, many months back, and whatever I was watching touched on the importance of survivorship plans for cancer patients. I shifted my focus more intently to find out how these differed from what I thought of as a treatment plan. The specific TV segment ended before it began, and it never went into enough depth to even explain what a survivorship plan was other than a detailed medical plan for continued care and survival. To me, this translated that a survivorship plan was merely an extended treatment plan.

I took to the internet and survivorship plans did seem to have a very medical tilt to them. These plans looked great in that they contained all your pertinent information about your past treatments and planning for future care in one spot. They were very similar to my health journal that I take for medical office visits. For me, a drawback is they are narrow in scope where only the medical aspects of continued health are part of the plan. They are forms.

Survivorship can’t be condensed into a form.

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At the beginning of treatment, I was given a piece of paper with blanks for me to fill in with all the particulars about diagnosis, surgeries, treatments, beginning and end dates, etc. It was a fine centralized place for information at a time when life suddenly was more overwhelming than ever, but rather limited for the long haul. It remained a good reference tool.

Some survivorship plans out there are better than others. One of the better ones I’ve found comes from the Minnesota Cancer Alliance, created by Karen Karls, a survivor from Grand Rapids, Minnesota. In addition to giving space for a historical documentation of dates and treatments, it provides great questions and things to think about for follow-up care. It looks like an awesome resource. The actual survivorship plan can be found here. Pick and choose what may work for your needs since it is lengthy.

I would add to this resource additional space or pages for any continued treatments needed if you are metastatic and have need for an ongoing list that can still be somewhat at a glance to provide an overall picture. It would have medicines, beginning/ending dates, side effects, results, and an area for why you switched or for additional notes. I use a spreadsheet to accomplish this for my needs.

I want a healing plan. In my mind, a healing plan combines the medical aspects of a survivorship plan (treatment plan) and the complementary pieces added to ongoing medical plans for complete care. A healing plan encompasses all of it. As a survivor, you are the executive in charge of connecting all the dots between your oncologist, primary care provider, naturopaths, acupuncturist, massage therapist, mental health provider, and any other therapies or services you seek for better health. This sounds like the job of a patient navigator, but the role of the patient navigator stays within an integrative health care network. He or she can put you in touch with approved services within a network. As soon as you want to seek something complementary outside of the system, you are on your own. Incidentally, they also haven’t been too keen on hearing how I think a patient navigator differs from a survivor navigator, probably because it opens up too many potential liability issues. It makes me mad the kinds of wrenches that get thrown in the way of someone’s best health.

A survivor navigator is hereby decreed a new position.

It is one of great worth for which you will receive no monetary pay. You are self-employed and get all the benefits from your new position. Maybe someday health care will see the wisdom of multiple services (even if they are outside the system) working in tandem with efficient communication and patient information sharing. Research should be doing A LOT more sharing of their discoveries and resources to find a cure. It only seems logical. What is crucial to remember as your own survivor navigator is that you must communicate important details of your healing plan to relevant parties. For example, your oncologist should know if you’re adding any new supplements to your health regiment because they may interact with treatments or other prescriptions.

They also may not. I have heard “we don’t have evidence for how these herbal supplements interact with drug x” a couple of times.

I try not to roll my eyes too loudly.

Translated, it means “there isn’t any evidence because big pharma will never sponsor such a study since it may be discovered something cheaper and more available works even better than drug x.”

I doubt there will ever be any such studies. I do not have medical training and am not making medical claims. The above are my own opinions which I openly share with my medical team. You need to do your research, have relevant conversations, and make the decision that you feel is best for you. I am not a doctor.

I do know some of the supplements I take, many of which have been suggested by my oncologist, have helped my body feel better and move more effectively.

Maybe it’s too pie in the sky to think that each patient can have a personal assistant to schedule every need the patient has and keep it all straight. Call me a dreamer. I’d love to have a person like that assigned to me, but it looks like I am that person and I’m already here doing the job. Right now it’s a seed idea that has the potential to grow into something real for others. Somehow this person has to have reach outside of a provider network to connect patients to complementary resources without taking on potential risks in so doing.

Health care is better when people work together.

In education, students with special education needs have what is known as an Individualized Education Plan, or IEP for short. Every learner has different needs. The goal is for targeted instruction to each individual student. In theory, all students have an IEP, most being informal and not legally binding like an official IEP. A student receives his/her best education when teachers work together as a team for a specific learning outcome. A healing plan is much like an IEP in that it’s individualized to the individual.

People are working together for a specific health outcome.

Think of it as a personal Individualized Health Plan, or IHP to stick with the acronym pattern.

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I have a lot of people and strategies in my corner supporting my best health. So much is crammed into that corner that it’s spreading out and filling other spaces and other corners. For me, this is a good thing because of the many options it provides at my disposal. I have developed a strength as an advocate for my own health that continues to evolve. If I relied solely on the medical realm, I would have limited myself to a very narrow scope of what is available. Components like a naturopath, acupuncture, and energy work receive a very luke warm reception so I steer clear of those when having specific medical discussions. Fitness, nutrition, meditation, and science-backed inquiries get more attention. People accept and believe different things are effective. Your healing plan will be individualized and fluid, just like you. Mine sure has changed over time. Use your best judgment and you will develop one that feels right for you.

A brief note: My last few posts have focused more on the medical side of my life as a cancer patient. I’ve chosen my words deliberately and have tried to convey that I support my doctors, nurses, and everyone on my team that cares for me. I fully support them. I have not expressed myself well enough if I have fallen short in conveying that message. I have also chosen my words carefully to make my voice heard as a patient. Being an involved patient doesn’t mean I am against the medical profession. Sure, there are things I would like to see change. It’s a huge motivator as I write specific posts. The idea that doctors and patients work together is key to all of it. I strive to work with them and find the best way for that to happen. An individualized health plan is part of what can help everyone work together. Health care is better when everyone involved works together.

 

Consider responding:

  • What do you feel are the most important parts of your individualized health plan?
  • In what ways have you advocated for yourself in terms of health or something else?

Patient Rights and Raising the Bar

An oncologist, radiologist, and surgeon all walk into a bar. Each was feeling frustrated because each felt he was more responsible than the other in successfully eradicating a patient’s cancer. In the midst of their heated discussion, a nearby bar stool swiveled to reveal the very patient they were debating (it was a juice bar). “You all have been a vital part in my healing, but I AM the most important factor in healing my cancer.” Each doctor was struck speechless, whereupon the patient treated each to a nutrient and antioxidant rich green smoothie.

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Image credit: pixabay.com

I’m feeling fired up today about many, many things related to health care.

Do you realize how empowered you are? YOU are the common factor that ties your specialists together. Good communication is key. Sure, they discuss your care without you, but you get to integrate that information together. It needs to make sense to you. It affects you the most. YOU are the one who has sought out complementary treatments and again the person fitting all these pieces of your health puzzle together. YOU have done the research and made informed decisions. They all work for you and your interests. YOU are the CEO of your team. That’s powerful.

A lot is being done TO you. You may feel out of control. You have rights. Knowing your rights is empowering.

  • Having complete and accurate information from your doctor about your diagnosis, treatment, and prognosis tops the list.
  • As a patient, you are entitled to privacy regarding your medical care and records.
  • You have the right to quality care and treatment consistent with available resources and standards of treatment.
  • You have a right to refuse treatment and be informed about the consequences of that decision.
  • You have the right to care and treatment in a safe environment.
  • Another big right is that you have the right to considerate and respectful care.

I want to add two additional patient rights.

One: The right to demand more research and more effective treatments for advance stage cancer.

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Image credit: pixabay.com

It seems to be an idea I keep repeating over and over. Tell your oncologist, radiologist, and surgeon. Make phone calls and write letters to administrators of treatment centers and hospitals. Find a researcher who would love to give you a tour of their lab and share what is being worked on.

I think this is a great way to create a direct line to the front line.

It also provides a face to the work the researchers do, even though I think many researchers went into their chosen profession because of loved ones who’ve been lost to illness. Every new face can continue to motivate researchers.

Touring a research lab certainly will better my understanding of work being done. It’s on my list of things to do. Spread the word to non-medical people (family, friends, coworkers, followers, etc.) so they can spread the word on the urgent need for more research for advance cancer. When more people speak up and demand more, and keep demanding more, there is a better chance that people will get more. I ask for more all the time.

Two: The right to have more equality and power with pharmaceutical and drug companies.

I feel this is an uphill battle but one worth having because those needing drugs are humans with feelings and deserve whatever can help them feel better. This one relates a lot to the aforementioned right to CONSIDERATE and RESPECTFUL CARE. It is neither when you are treated like you don’t matter or are insignificant. THEY are there for ME, not the other way around. Too often the latter is the norm. I could easily throw insurance companies to the mix.

I am tired of feeling exhausted with efforts to make a positive difference, but I will keep working to do so for myself and for others. I am so sick of arguing and jumping through hoops for what I deserve in order to be well. I have mentioned this point in earlier posts: I’m well enough to argue for myself and hoop jump, but what about the patients who are physically too tired or weak to do so? Those who are sick are vulnerable just like any other powerless or marginalized segment of society. Take your pick – there are plenty of “others” in society. They are discounted. Laws and policies do not work in their favor.

Here’s more depressing news – the cancer the specialists argued about eradicating in the beginning of the post may not have been eradicated. It should be part of the complete and accurate information you get from a doctor about a cancer diagnosis and prognosis. 30% of cases recur or may metastasize. Unfortunately, it could still be lurking, biding its time. A new cancer can also grow. You, being extremely empowered, need to know this is a possibility. You, being extremely empowered, need to stay vigilant in understanding your risks and the red flags that may suggest secondary cancer. I apologize in advance if the following freaks people out. It freaks me out, too, but I feel it needs to be shared. Jo Taylor is the founder of After Breast Cancer Diagnosis and a patient advocate living with secondary breast cancer. She can be found on Twitter @abcdiagnosis and her website is abcdiagnosis.co.uk.  The graphic below (used with permission) illustrates warning signs that should be on everyone’s radar.

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Years ago, I felt a little tired but just chalked it up to the demands of my job. A lot was going on personally for me as well. These things could very well have been why I felt tired. Many people are fatigued who do not have cancer. Cancer was the farthest thought from my mind. I have no idea of knowing for sure.

Although the above symptoms pointing to a reality (or possible reality) for some is depressing or upsetting, knowledge is power.

Let’s talk about the term healing. Semantics can be tricky. Healed cancer, treatable cancer, cured cancer. Can you be healed without being cured? I think the answer is yes. Healed is more of an element of mind and spirit. Healed and cured are probably the most synonymous. You can be healed and still have treatable cancer. You can be healed and have curable cancer. You can be cured, but not healed. And you can not be healed while having treatable cancer. I still hold fast to the idea that you are the most important factor in your healing as you have to decide what you are going to allow and how it works for you.

It’s time to get back to the doctors who walk into the bar. They may continue to argue. They may nod politely at your declaration. Perhaps they believe you. When you assert that you are the most important factor in your healing, you raise the bar of expectation in doctor-patient relationships. You change how you are perceived. You may even change the treatments offered to you. Maybe you find something that is a possibility for you that your doctor hadn’t considered. You are important. You matter. Your voice matters. The bar is important.

A patient, researcher, and leader all walk into a bar. Here’s the punch line: They are all the same person . . . you. Being an active member on your cancer care team ensures that no aspect of your care is taken for granted. Your team is accountable to you, as it should be. And here’s even more good news: The oncologist, radiologist, and surgeon have been waiting for you. They wave and welcome you to your seat at the table.

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Image credit: pixabay.com

Consider responding:

  • How do you feel you are a part of your team for your health?
  • Are there any other rights you’d like to add to your personal list of patient rights?

 

Trauma, Cancer, and Hope

Trauma

A good friend spent part of her weekend doing some reading on trauma for work and discovered the acronym H.O.P.E. standing for the phrase Hold On Pain Ends. She knows I have tremendous faith in the transformative power of hope. Holding on and believing that all will be well again is a wonderful feeling and vision for healing.

Many people think of trauma as it relates to military personnel who return from active duty with PTSD. People who have been in accidents, suffered abuse, had violence directed at them, witnessed atrocities, been through disasters, lost loved ones, and have been through (or continue to go through) an illness also can be diagnosed with PTSD. Any negative event can cause trauma.

Cancer and Trauma

PTSD is a mental health condition that develops after exposure to a traumatic event. Cancer survivors have experienced their fair share of traumatic events. Painful and emotionally stressful tests, treatments, receiving bad news, hard emotions to process, and living with chronic or painful physical issues are possible sources of trauma. Looking in the mirror at a changed body, living with lymphedema, and having the pain of neuropathy are daily reminders for some people. Fear of recurrence may always be on a person’s mind. Some anxiety is normal and quite frankly unavoidable for cancer patients and survivors. When these feelings persist or worsen, it could be a sign of ongoing trauma. Symptoms may include things like nightmares, trouble concentrating, feeling fearful, guilty, angry, avoiding things that trigger bad memories, and loss of interest in people or activities you used to enjoy. Other possibilities may also cause these.

I believe seeking professional help is the best approach to address working through trauma. Sharing what is painful can help identify the root cause whether the pain is physical or emotional. Effective solutions can be tailored to a person’s specific needs. Speaking to family, friends, or support groups are other possible choices. Even writing it out can be helpful in sorting out what you think and how you feel as a pathway to ending pain.

Hope

My thoughts keep coming back to that acronym about holding on because pain ends. Hope is hope. How else can a person take an active role in feeling physically and mentally healthier? No official trauma labels need to be involved. Everyone has times where something painful is experienced. I am not a mental health professional, but nonetheless have a few thoughts to share for dealing with pain. I think of it as a way to Help Other People Excel. I can’t say that’s original. I also can’t find a source to credit.

Pain can be a teacher.

Sometimes I need to experience pain and sit with it so I know what not to do. When I’m sore, my body is often bringing something to my attention. I may need to rest. Maybe I’m doing a movement incorrectly. Possibly I’m using new muscles and my body is thanking me for using them but reminding me to do so gradually. I’m also being taught something if I experience emotional pain. Every experience teaches me something, even the ones I find emotionally difficult. You can’t ignore physical or emotional pain. Both get worse if you do. Listen to your body.

Grief is allowed.

You can’t just “get over” things. Just as with the grief when someone passes, many events can still be a passing of something and involve grieving. Again, just as with the grief when someone passes, it comes in waves. One day you are just fine with not working and having a flexible schedule, and the next day this very same thing has you in tears all day. Some insensitive comments leave you unfazed, and then there are others that you believe are beyond cruel that echo over and over again. Some grieve body parts. There are many things you “used to” do that now no longer exist. Those who have had cancer have lost a lot. There can be unexpected spurts of grief that come at the worst times. It’s normal. Allowing yourself time to feel feelings will eventually lead to more good days than bad.

Find a new focus.

Starting something new gives an opportunity to move forward with something different. Fresh starts have their merits. It could be a new hobby or interest. I have mentioned before that working out has turned into a positive focus for me. I also have more time to write. Maybe it’s something bigger like a new job, relationship, home, or city. Change may be exactly what is needed. If nothing else, change serves as a good distraction. Everyone needs a break from whatever makes life harder.

Exercise.

Here is my repetitive plug for exercise. Physical activity can help you see you are stronger than you know. This helps physically and emotionally. I have a long ways to go to make myself even stronger, but I’m stronger than I used to be. Exercise helps me feel more confident and in control. It makes me feel good. I feel less stressed. Exercise provides an opportunity for me to work on my inner strength while I work on improving my body. Finding and reclaiming power by moving is extremely therapeutic. Work with a punching bag is a very effective way to reclaim power.

Get outside.

The effects of being outdoors for me are similar to exercising. It makes me feel good and less stressed just like exercise does. Fresh air and nature calms me. Problems often sort themselves out as I spend time in the woods. My head always feels clearer. Maybe it’s because nature is grounding. If you do not have access to a handy outdoor source like a park, farm, or green spaces, something as small as a garden plot can give you the opportunity to dig, to let dirt fall through your fingers, to weed, to plant, and to watch something new grow. Container gardening has become very popular in areas where green space is limited. This is also a great option if you have some physical limitations. Sitting in the shade with a refreshing lemonade and reading a good book still counts as getting outside.

Forgiveness.

Forgive yourself for past actions. I have heard a lot of people say how important it is to forgive others, show universal love and kindness, speak positively, and have at least one good friend you can count on. All important. Even more important is to forgive yourself, love yourself, have positive self-talk, and be your own friend. I have been pretty hard on myself and now I am much kinder. I believe pain can end when we treat ourselves like we treat others. Each day is a new opportunity to treat yourself well with kindness and forgiveness. Reset every morning.

Believe.

Believe in hope. Expect the best. Hope begets hope. For me, things always come back to my unwavering belief in hope. One of my favorite hope quotes reads:

“When the world says,

‘Give up,’

Hope whispers,

‘Try it one more time.’ “   – Unknown

I love that the source is unknown. It somehow makes it even more appealing to me. It’s as if there is an anonymous and universal whisper that could be from anyone anywhere in the world. The whisper may be a gentle hush. I like thinking of it that way. I see it in the flame of a candle. I hear it when a bird sings. I feel it with good friends. I find it in some of my favorite places. You know where some of those places are if you know me well.

Here is one of my favorite places where I hear the hush. Can you hear it, too?

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Author Anne Lamott describes a hush as something sacred. Hope whispers softly and pushes us to keep trying. Hope as a hush is sacred indeed. Pain ends. Hope remains. It can replace pain and grow exponentially. I continue to listen to the whispers of hope.