The time period of the end of February throughout the month of March in Minnesota is filled with uncertainty. Mother Nature can bring harsh days of snow, steady rain, and hopeful sunshine. In the case of my cancer, from testing to diagnosis, my emotions echoed Mother Nature in its variety and unpredictability all those years ago.

And just as Mother Nature repeats a similar pattern each year, so too does my heart, body and soul. Sometimes my mind forgets specific dates, but the body knows. My soul remembers the anguish of fear and uncertaintly as I went through testing. My body remembers the post-op pain and my heart aches for all that has been lost. Layers and layers of loss.

When I look into the mirror of my life since my diagnosis, there are cracks, creating images that don’t make sense. The cracks began as a chip of fear and continued to spread a web of emotions and changes into my work, relationships, appearance, and overall health. 

Looking closely at the reflection, my face is familiar, but it’s like looking at someone you knew as a child and is now an adult. You know there has been growth and change, so the essence of the person may be the same, but so many traits are distorted that you question if your eyes are playing tricks on you. Are you still there, I wonder? Uncertain, I keep searching the image for answers.

In the eyes that look back I see the blissful ignorance of longevity has been replaced with thoughts of mortality. I see the days that were so harsh, my breath was taken away, as well as the days spent in limbo and rain. I also see sunshine and someone who has crawled to her knees, and then to her feet, time and time again. Not because she had the strength to do so, and not because she’s special in some way. No, she’s just someone who decided there was no other choice than to apply glue to the cracks in the mirror to prevent it from shattering beyond repair. 

In reflection and celebration of eight years of no evidence of disease – 2023.

Dedicated to all cancer patients. May your glue have super powers and may you see sunshine in your reflection.

Have you ever taken a solo trip, even for a day or two? If you have, I wonder if you found it to be lonely, invigorating, or maybe both. Having just returned from one myself I began reflecting about the solitude I experienced during cancer treatment in comparison to now, post treatment. 

Full transparency, I consider myself an introvert, so I’m looking at this from that lens. I have learned over the years to boost myself to an extrovert space at times, and I love being on stage, but I’m a true introvert who needs alone time to recharge.

The events or emotions within moments of solitude during and post treatment can bring you into a pitfall or they can empower you. Here are three examples of pitfalls that can occur, and how you can find your power in them. 

During treatment:

The first pitfall a newly diagnosed cancer patient may experience is people in your space, knowing details of your life you maybe wouldn’t share normally, making you uncomfortable and causing you to withdraw into solitude. There is power in creating boundaries, however, as you navigate what you share and with who. It may also be empowering to learn how many, or who in your life, show up for you in a time of crisis.

A patient may then become overscheduled with appointments, leading to needing/craving time alone. Time alone allows space for thinking, perhaps leading to a downward spiral of thoughts and emotions. Emotions can include thoughts of sadness, worry, thinking about mortality, and maybe jealousy of what others are doing. It can be hard to know your friends are out and about having fun while you isolate yourself to stay healthy, or just aren’t feeling up to leaving home. The power of the alone time during treatment is that it is time to recharge – if you use the time well. Zoning out in front of TV doesn’t help work through emotions, but does allow an escape from thoughts. Try to balance quiet reflection time and time to let your brain shut down for a while.

Overeating or undereating are common during cancer treatment. If you find yourself in solitude you may overeat, as you struggle with emotions, or under eat because you don’t feel up to eating, or because you don’t want to prepare food for yourself. The power available to you is an opportunity to take control where you can. When you go through cancer treatment much is out of your control, but, you can control what you put into your mouth!

Post active treatment:

Post treatment You might fall into the pitfall of  feeling like a different person, leaving you feeling a bit lost in your life and relationships. Some people may disappear because they can’t handle it. There is then power in assessing relationships and deciding who you want to allow back in your life. This might also be an opportunity to redirect your life, and may involve going back to school, getting a new job, or beginning different relationships.

The second post treatment pitfall is that cancer doesn’t end. You know it, but others don’t understand that they effects don’t necessarily end when treatment does. This can lead to solitude if, for example, you cannot be as physically active with certain friends as you used to be – leading to changes in relationships. This lack of understanding may drive a wedge and cause resentment on either part if you withdraw from activities. Sharing your ongoing struggles with others can deepen a relationship. Allowing people to see the realness not only educates them, but can bring more compassion and understanding. And if ongoing effects lead to more solitude, perhaps you learn different activities you enjoy.

Lastly, when you have alone time post treatment, you may become stuck in fear of recurrence. Once you’ve experienced how quickly life can be turned upside down, it’s hard to believe that all will be okay. But, I’ve got your back! There is power in taking action, despite fear, and I created my ABLE strategy to help people do just that. You’ll find the ABLE download HERE! Reflection is powerful. When you use solitude to thoughtfully reflect and assess, things become more clear and less scary. In reflection you might observe fear (or any emotions), yet not stay stuck in them because after things are clear, you’re ready to take action.

The pitfalls of solitude can drain you of time, energy and joy. It can be challenging in those moments of solitude to see the power you have, but I encourage you to consider this: Cancer is REALLY hard! If you are a cancer patient, whether in treatment or post treatment, you are already doing the hard stuff. Let that be your point of reference to see your power to create solitude that nourishes you, as you look forward to blue skies ahead.

Sometimes a person can be many years out from active cancer treatment and something triggers you to realize the cancer has changed you forever. The changes may be obvious, like your hair, but some changes become a part of your life. Integrated into who you are, and then an event or progression brings reality into focus.

The Back Story:

At the time of this writing I am six years of no evidence of disease from stage 3 breast cancer. I have had a double mastectomy, chemo and radiation. That itself is a lot. I have also been on post-treatment medications for five years, and while the medications’ side effects have not been major, they have been notable.

A couple of months ago I started having pain in my fingers and my first thought – as it likely is with any breast cancer patient – was that it could be the cancer returning. When there is a recurrence of breast cancer, it often metastasizes to the brain, bones, or lungs. Once I found my logical footing, I thought about the fact that there is arthritis in my family and I’m in my early 50’s now. But, being the diligent patient that I am, I mentioned my pain to my oncologist at a check up. He told me if it continued, to see a Rheumatologist. One of my medications had caused a trigger thumb a few years ago, so I was already established with a Rheumatologist thankfully, and leading up to the appointment I made notes of where the pain was and how often.

Having had premature twins, I have been immersed in the medical community for over 20 years and I feel like I understand quite a bit, but I struggle with reciting the information to others. Science, and relaying specific scientific information is just not my strength! So, in explaining what the doctor told me about my hand pain, bear in mind it’s my interpretation in layman’s terms.

The Good News:

I have arthritis. Why is this good? Because it’s not cancer, of course, but also the explanation the doctor gave me reminded me to give myself grace. You see, I’m a hard worker with both my business and the family members that I care for, as a sandwich generation person. I’m tired, often, and my body just plain feels old. My Rheumatologist reminded me that the medications I have been on for five years can cause joint and bone pain. Then came the scientific stuff that made sense, but I can’t recite in medical-ease. The doctor said when the hormones are blocked it may affect the joints and nerves. He explained that the arthritis may have been there anyway, but by being on these medications that block hormones, my body is changed. In other words, those receiving hormone blockers may be more likely to develop arthritis and the pain may be more noticeable.

More Good News:

I almost cancelled the appointment with the Rheumatologist because my pain had improved, but I’m really glad I went because of three reasons.

1. I realized I had been eating clean the past few weeks, with mostly plant foods and few processed items, and it has made a difference in my joint pain!
2. I walked away with some ideas of what makes sense for me to do when the pain does occur.
3. I was reminded that I had cancer, that I’m still on meds for it, and it still impacts me. The side effects have been integrated into my life, so I don’t think about them daily. This realization sucks to an extent, but it also allows me to give myself some grace on a hard day.

“It’s not easy to know, I’m not anything like I used to be.” Sara Bareilles, She Used To Be Mine

What Grace Looks Like – For Me:

For some time I have been working on creating consistent routines that nourish me holistically, including exercise, breathing techniques, journaling, and nutrient dense foods. I need to remind myself that it’s okay to rest when any side effects intensify. Caring for myself in these ways, by taking action and also having compassion for myself when I can’t do it all, that is grace in my mind. These reminders that cancer will always have an impact on my life also makes me think about the ones who have passed from this disease. I know the best way that I can honor them is to live with purpose, joy, love, and grace for myself.

Have you ever heard the phrase scanxiety? Cancer patients know too well how the period of time leading up to scans, up until results are received, can cause anxiety.

According to the Mayo Clinic, “Anxiety disorder due to a medical condition includes symptoms of intense anxiety or panic that are directly caused by a physical health problem.” This means that the worry and fear of cancer patients is a real thing!

Some of the symptoms of anxiety can include:

• Feeling nervous, restless or tense
• Having an increased heart rate
• Sweating
• Trembling
• Feeling weak or tired
• Trouble concentrating or thinking about anything other than the present worry
• Having trouble sleeping
• Experiencing gastrointestinal (GI) problems
• Having difficulty controlling worry
• Having the urge to avoid things that trigger anxiety

I believe that Cancer-xiety is a concern or worry with daily and significant events related specifically to a cancer diagnosis. 

Some of these triggers of cancer-xiety might be:

• Bloodwork, or tests, such as an MRI. These can make you anxious, before, during and after. This may be due to not only the anticipation of results, but also being uncomfortable during the test itself and knowing that if something shows up in the results it can lead to more tests.
• Change in oncologists. Cancer patients rely on their oncologists to help them make decisions that can impact their mortality, and that relationship is important.
• Oncology appointments can bring test results, and perhaps, a change in treatment. Any results, or change in medications, or the frequency of check ups, reinforces the fact that much is out of control for the cancer patient.
• Medications all come with side effects and can cause some of the same symptoms as anxiety, such as fatigue and sleep disturbance, which leads to a physical and emotional toll on the patient.
• Cancer-versaries, or the big dates, such as your diagnosis date or a surgery date can bring difficult emotions back to the surface.

Why do I think this is so significant for cancer patients?

Cancer patients have a heightened awareness that you can easily be that 1 in 8 (or whatever statistic associated with developing a particular cancer). Truth bomb…some of us were diagnosed without any symptoms. We KNOW that you can be going through life feeling fine and then be thrust into appointments and treatments, and forced to face your mortality.

It is a heightened awareness of the unknown AND knowing some things are beyond our control.  We know what those treatments feel like, so while the cancer-xiety may seem like out-of-proportion emotions, it’s based on real trauma. That trauma sometimes makes the little voice inside your head tell you that every ache is the cancer coming back, and THAT is cancer-xiety. 

I’ve developed strategies to help me persevere through the trigger events and give an over view of these strategies in my YouTube video: Persevering Through Cancer-xiety and I invite you to check it out to learn more.

Have you ever wanted to read a cancer patient’s mind?

I have found a community of cancer patients on social media who are loving and supportive of each other. They are sometimes funny, or sassy, and always honest. They are a kaleidoscope of people, all different and beautiful.  This letter is made up of many pieces, or many people’s experiences, because I asked the cancer community what they want their loved ones to know, but may not voice out loud.

Dear friends and family,

Maybe you have known me all my life, or maybe we are newly acquainted. Maybe we live together, or maybe we spend our days together at work. I have something to tell you, well, a lot of things to tell you. So, settle in with a notepad and pen, you’re going to need it. 

I have cancer. Maybe this is a shock to you, but I have been silently going through some testing, and now that I have a diagnosis, I need you to know. 

I need you to know that I understand you care about me, and you don’t know what to say or do. Ask me, and I’ll tell you what would help me, because I may remember this moment and it can change our relationship. Some of you will become super supportive, and I may not hold back with you. You’ll get the cancer card, AND the whole deck!    

This letter is for all others, with love and respect, for insight. 

I need you to know that I’m scared, and hearing stories about other people you know, with the same cancer, or about how I’m young and treatments have improved, is not helpful. 

There may not be a logical reason for my cancer, and asking the cause can assign blame. I didn’t eat the wrong thing, drink too much, stress too much, this is not my fault.

As I go through more testing, telling me to be positive doesn’t make the anxiety, or scanxiety, better. This is hard, and I’m going to have some ups and downs.

I may have surgery to remove cancer, but there is so much more ahead that neither of us can anticipate. After surgery, my cancer is gone for now, and it could still come back. I may be unwell but I can still make my own decisions…don’t feel you need to make them for me. Please don’t tell me to fight, of course I want to live, but I’m not a cancer victim fighting a battle. Words are powerful and I’m just getting through each day the best I can. 

Treatment is long, and hard. Try not to look at me with pity. I’m still a normal human and have normal feelings. My body feels like it weighs 5,000 pounds after a round of chemo and that’s why I’m in bed for days. I literally can’t get out of bed. Please don’t be afraid to tell me about your everyday life. I NEED to hear what is happening with those I love, and want to think about the everyday problems for a while. Yes, hearing about your child’s tantrums or your husband snoring is welcome relief from cancer!

I find out that the long term side effects of treatment are ongoing , some of them forever. Life does not always return to normal for cancer patients after treatment. It can be a life sentence and there may be a time when I don’t feel like I fit into my old life anymore, like I will never be the person I was before my diagnosis. At the same time, I can feel like the same me, but forever changed. You know, We really are all new people — all human cells turn over through the course of a 7-10 year period. With chemo, I killed off more cells faster, so I’m really a whole new me! Reborn with a complete absence of peace of mind and a new and extremely dark sense of humor amongst other things. 

Losing my hair during treatment, I get it, but when it grows back lush, and gets taken away again because I’m taking meds to stay alive, that makes me sad. Don’t try to convince me it looks fine. I see it. These same meds, they can cause pain. It’s the kind of pain you feel in your bones, which then makes you wonder if the cancer is back. The cancer has changed me physically, and I may not be able to do the things I used to be able to do. I hate that you can see how exhausted I am, even when I try to hide it.

My dear friends and family, please listen, no matter what, celebrate, when I’m doing well, and comfort me when I’m not. Just continue to support me beyond active treatment. There may be times when I may hold some stuff back, because it’s less awkward, or so that your memories of me are not the chronic pain. Or maybe I’m going through more testing again, and I don’t want you to worry, but you can always ask questions…I’m open to that.

Cancer may have shaped me, but it will not define me.

To the ones at the center of my heart, my children, I don’t think it’s fair for you to have to live in a world without your mother. I can’t guarantee I can look down on you and protect you, but if I can, I absolutely will. 

Thank you, friends and family, for looking through the glass of the kaleidoscope and watching over us, where there is light and dark and pieces that don’t fit together, until you make another turn.

Have you had an increase in stress recently? Are you ready to make changes to improve your stress?

Our bodies help us manage acute stress by increasing our heart rate and breathing, as we prepare to battle. This is helpful in an emergency, but many people are living in a chronic state of stress, affecting our mind, body and behavior. Symptoms of chronic stress can include; headaches, muscle tension or pain, fatigue, sleep problems, irritability, overeating or undereating, and social withdrawal. Left untreated, these effects can lead to many health problems, including; heart disease, high blood pressure, obesity, and diabetes. 

There ARE small steps you can take to help manage the chronic stress!

Tip 1: Do a brain dump, or write in a journal

What do I mean by a brain dump? 

Simply, it is dumping your thoughts from your brain to declutter and organize your thoughts. I suggest you do this by using a paper and pen to write down all your thoughts. Anything goes, from your to-do list to your feelings. It doesn’t have to be neat, or make any sense, and you can make a list, or get creative. The purpose is to just get the information out of your head, which can lead to less stress and more productivity.  

If brain dumping doesn’t appeal to you, perhaps journaling will. If you already journal, great! I hope you take some time today to write down your thoughts. If you are new to journaling, however, I have found that beginning with even just one line each day is helpful.

Tip 2: Quality Sleep

Like you probably have heard, getting enough quality sleep is important. But do you know the WHY and the HOW to get quality sleep?

The Why: Not only can good sleep help with stress, but it can also aid in maintaining a healthy weight. Plus, so much more!

The How: Physical activity during the day and creating a bedtime routine are two things you can do to set yourself up for a quality night’s sleep. 

Tip 3: Nutrition

I bring nutrition into stress management because what you put into your body impacts your mood, brain function, and your overall health. In my on-going education I have learned about the benefits of fiber, including reducing the risk of many diseases. And you guessed it, fiber is found in plant foods! Along with the fiber in plant foods, you are also getting vitamins, minerals and antioxidants.

Consider meal planning for the week and incorporating mostly plant based foods for quality nutrition to fuel your mind and body.

Tip 4: Movement

Do you have a fitness routine? If you do, great! If you don’t, it’s not too late to get started, and it doesn’t have to be complicated. Do note, however, if exercise is new to you, or if you have a health condition, you may want to consult your doctor before incorporating a new activity. There are long term benefits to our physical well-being from exercise, but the immediate benefits include stress management.

If you are feeling stress throughout your day, taking a ten minute break for some movement can help bring your stress level down. If you can’t get outside for a walk. Try indoor walking! Simply walk in the space you have. Another idea is to put on some music and move, in whatever way feels good to you. However you choose to bring movement into your day, know that you are doing your mind and body good!

Tip 5: Meditation

First let me explain what meditation is and is not. Meditation is really the narrowing of thoughts to regulate the body’s internal dysregulation. It is internal attention to your breathing, movement or thoughts to bring you calm. Meditation is not necessarily associated with a specific religion or philosophy. 

The intended purpose of meditation is to bring you from active thinking to calm, and it can take practice to quiet a busy mind! Different types of meditation can include; guided meditation, movement and mindfulness. 

My favorite way to meditate is to find a YouTube video of rain sounds, which happens to be calming for me, and then I focus on breathing and clearing my mind. 

Again, meditation is a practice, so if you are new to it, be patient with yourself. Over time, it can benefit you by helping to manage stress.

Tip 6: Breathing Techniques

Breathing is something we do naturally, but when we are stressed we tend to take quick, shallow breaths. However, when we focus on our breath and breathe slowly and deeply, it can have a calming effect on our nervous system. The best thing about breathing techniques is they can be done anytime and anywhere!

A favorite breathing technique of mine is called The 4-7-8, or Relaxing Breath, by Dr. Andrew Weil. Another option is to simply place your hands on your belly and focus on the rise and fall as you inhale and exhale deeply. 

Breathing techniques are useful tools that you will always have with you!

These 6 stress management tips are about building small, actionable steps, one at a time. Decluttering your mind, quality sleep and nutrition, movement, meditation and breathing techniques CAN help reduce stress. At my YouTube Channel, Inspired Vitality, I created a video that goes a little deeper into these six stress management tips, and I do offer a one time, customized virtual stress management session. I invite you to reach out to me at hhckatherine@gmail.com to learn more and schedule a conversation.

What is hope, and how do you find hope when you are struggling? I was asked recently if I had a video on my YouTube channel about hope, and that question sent me into a thoughtful process of discovering and defining what hope is, and how do we find it in times of need. I asked my friends on Twitter what hope meant to them, and I dedicate this blog to those who shared their thoughts and hearts. Reading your responses and spending time in reflection has brought me to this, so thank you.  

Maybe you are struggling with cancer, the pandemic, or both. Or, maybe, something else. By reading this, I want you to be inspired to find your hope.

For many, hope can be found in the everyday-ness, like a beautiful view, or watching your children grow. But, it can also be marked by milestones, like major life events. In a broader sense, hope can be in the belief that people are working hard to make your life better, perhaps with research or treatments. It is optimism for the future, or looking forward to something in the future, but it’s found in the present moment. 

When I was going through chemo, I had hope for healthier days. In the moments of struggle, I thought about my children, the doctors and nurses that cared for me, and the friends and family who supported me, and I used them as a guide to hope for healthier days. The intangible hope in the future, lies within tangible things, people, or events of the present. 

Hope is the decision to take external factors, and make them personal – turning them into something that helps you continue forward. It is that little voice inside you, guiding you. That voice, or that message, LEADS YOU TO THE HOPE. The message might be:

• You’re doing a good job.
• You make a difference.
• You have people working to help you.
• You have people that love you.

Accessing that hope is key, and to do that you need to be a grateful, present observer in the now. I believe this is a skill that lies within each of us, a skill that needs to be practiced. By practicing gratitude of even the simplest of things, you will tune into the internal voice that brings you hope. So, when you are struggling, pause, and be grateful for something…anything. Maybe it’s a beautiful sunrise, a great cup of coffee, or maybe it’s a loved one. That gratitude will turn up the volume of your inner voice and reveal your hope. 

I know this is especially hard when you are facing your mortality, so here’s another example. Say you are going through chemo, pausing and feeling gratitude that the nurse is kind, or that there are even chemotherapy drug options for you, will turn up the volume on your internal voice telling you that you are receiving help, leading you to the hope of healthier days. 

If you are struggling with finding hope amidst a difficult time, I invite you to email me at hhckatherine@gmail.com to schedule a conversation with me to learn how I can help you find your hope.

How do you feel when you see pink during the month of October? Does it inspire you in some way, or does it make you cringe? Referred to as Pinktober in the cancer community, October can mean many things to those who have had breast cancer, or are going through treatment, as well as those living with metastatic breast cancer. For some people it is empowering to join walks to raise money, and that may provide a sense of community. For people at different stages of treatment, the constant reminders of their struggles can present emotional trauma. Additionally, Pink is not representative of all breast cancer patients, because men do get breast cancer too.

Breast Cancer Awareness Month began in 1985 with the goal to educate women about breast cancer and early detection tests so that they could take charge of their breast health. The month has also become dedicated to raising funds for breast cancer research and other related causes. In reality, however, it means different things to different people, and I want to share with you various perspectives of this well known awareness month.

Pink Promotions, while not as prominent this year during the pandemic, typically have nothing to do with raising money to find a cure, which is really what is needed. For example, pink beer at bars and restaurants, or various pink products at stores, with funding not actually going to breast cancer organizations. During October some awareness campaigns use sexualization’s or humor, with slogans such as, “save the tata’s,”  “save second base,” or “Feel For Lumps. Save Your Bump.” There is nothing sexy or funny about breast cancer. It is killing people. The promotions and humor can do more harm than good for the cancer community. It can also be frustrating to people diagnosed with other cancers to have so much awareness around breast cancer, while other forms of cancer are not acknowledged. Every person with this disease will have a different opinion on this matter, and their own opinion may even change throughout their treatment, or if the disease should progress.

According to the Centers for Disease Control and Prevention: Except for skin cancer, breast cancer is the most common cancer in women in the United States. Each year in the United States, about 250,000 cases of breast cancer are diagnosed in women and about 2,300 in men. About 42,000 women and 510 men in the U.S. die each year from breast cancer. Black women have a higher rate of death from breast cancer than White women.

I’ve shared with you some thoughts from other patients that I picked up on social media, so now I’ll tell you where I stand. The first October after my active treatment it was hard. It was really hard to see all the pink. I felt like I saw pink at every turn, and at that point all I wanted to do was be normal. After 6 months of treatment, I wanted to immerse myself in everyday life, not the heaviness of cancer. Yet, I couldn’t escape all the messages around me and it made my emotional recovery harder. Now, I see the value in the efforts to raise money for support of those going through treatment and for finding a cure. However, as I’ve said, the campaigns tend to be misguided in how they present themselves.

My goal is to share education in an honest, straightforward manner, not just about breast cancer, but all cancers, because all cancers matter. I want YOU to feel supported.

Admittedly, many of my social media posts and YouTube videos, especially this month, are about breast cancer. This is because it is what I know best of all cancers, and it does not mean that any other cancer is less important. What this means is that when I do put out information about other cancers, it will take more research for me because I’m not living that experience. I invite you to reach out to me and share your story if you are living with cancer, so I may learn. You can email me at hhckatherine@gmail.com.  

At the beginning of this blog I asked if Pinktober inspires you in some way or makes you cringe. My answer is both. Some of the messaging and the pinkwashing done by unrelated companies makes me cringe and is not representative of all breast cancer patients. At the same time, I’m inspired to bring back what this month was created for, and that is education, so that people can take charge of their breast health.

What do you think about warrior vs survivor vs thriver? This is the question I presented on social media to the cancer community, and the response was massive and diverse. These three little words are commonly used by cancer patients themselves, as well as others, to describe a cancer patient and can invoke a wide range of emotions.

Let’s start with the word warrior. As I write this there is a news story on the TV talking about a child fighting cancer, and what a warrior they have been through their cancer journey. The language used would make some cringe, while others embrace it. Some cancer patients are against using battle words, but for some, it makes them feel powerful. Despite that difference, over and over again cancer patients said they do not like it when someone passes and it is said that they “lost their battle” with cancer. This phrase implies that the patient didn’t try hard enough or they were a failure. Please, if you have a loved one who passes from cancer, there is no need to embellish the fact that they died. It’s okay to say they passed from cancer.

The word survivor appears positive and is probably the most commonly used descriptor of someone who is not in active treatment, but for those that know better, it’s not that simple. First, there are some cancers that have such a high recurrence rate that the patient is never considered in remission by many in the medical field. Instead, the term No Evidence of Disease (NED) has been adopted to say that the patient does not currently show signs of having cancer. Then there are those who are living with metastatic cancer, or cancer that has spread. These people may never actually survive cancer, and therefore may not feel like survivor is accurate for them.

Thriver is not as commonly used to describe cancer patients and I found many do not relate to it. For some it is because they are either currently undergoing treatment, or because the ongoing effects of their cancer are limiting their ability to thrive. Suggesting a cancer patient should thrive may be thought of as exhausting, or unachievable.

Just as we go from calling newborns babies, then kids, then teens, the labels cancer patients may use in reference may change depending upon their mood, situation, or where they are at in the process. The emotions that a patient goes through is a roller coaster, with many twists and turns in addition to the hills and valleys. I encourage friends and family to be understanding of that, and if you can, ride the roller coaster with us. Listen, pick up on what terms we use, and go with that when you offer your support. The words we use indicate our current mindset. No matter what you call us, we do know you care, and that’s what matters most. Ultimately, many in the cancer community would prefer we do away with these media terms and simply call it like it is. This might mean saying someone has had cancer, is a cancer patient, or is living with cancer.

You may be wondering how I feel about these terms, since I asked the question. I have often said, “Cancer does not define me, but I have allowed it to shape me.” Admittedly, when I was going through cancer treatment I was inspired by the tune, “Fight Song.” Now, I don’t relate to the battle words, and warrior in particular. This is because, frankly, I don’t think of myself as special. I happened to have been diagnosed with cancer, and I got through it the best I could. (See the roller coaster here.) I do use the word survivor, in context, as a short cut. For example, when talking with someone who doesn’t know I’ve had cancer, saying I’m a cancer survivor takes less time than saying that I had cancer and I’m still on medications, but I’m currently considered no evidence of disease. Thriver, I feel is a positive term, which I do like and not only for those affected by cancer. It doesn’t mean I don’t struggle with on-going side effects, or have concerns about recurrence. Rather, for me, thriver means that I am doing my best to live well. I’m thriving within the scope of my current situation. Or, perhaps, I should change that to striver. Each day I strive to fuel myself with nourishing food, I strive for fulfilling relationships, I strive for work/rest balance, and I strive for quality sleep and regular exercise.

Ultimately, all those who contributed want their caregivers and loved ones to relate to them as who they are, independent of cancer. They just want to be themselves. The BEST thing that came out of this social media conversation, for me, was that while some had very strong opinions, everyone was respectful of each other. It was a thread with different people, from various countries, with the commonality of cancer. While it is a club that nobody wants to be a part of, what I found by simply asking a question, was a caring community.

Whether you are a cancer patient or a caregiver, there is much to learn from each other, and even with cancer, you can have fun while doing so. Thanks, Cancer! is a podcast of two friends sharing stories and ideas about cancer. Their episode from May 19, 2018, Cancer Semantics: What Do We Call Ourselves, offers more thoughts on this topic.

I want to thank everyone in the Twitter cancer community who shared themselves, thoughts and hearts with me. There are too many to list, and I may not have responded to every comment, but I promise you I read them all and my heart is filled with your support.

According to Merriam-Webster, Uncertainty is defined as: doubt, dubiety, skepticism, suspicion, mistrust, or lack of sureness about someone or something. Uncertainty may range from a falling short of certainty to an almost complete lack of conviction or knowledge especially about an outcome or result. While you may be sick of hearing this word, it truly defines 2020. If you are a planner by nature, not being able to plan, or a constantly changing schedule can wreck havoc on your nervous system. You may be feeling a lack of control, disheartened or uncomfortable, which can lead to stress or lack of motivation.

Do you live by your calendar?

Even those of us who are ultra planners can adjust to uncertainty in the short term, but living within it for months, with no end in sight, can break the planners spirit. While you may not be able to change your circumstances, you can learn to manage how the uncertainty impacts you.

Step 1: Acknowledge, accept and trust

Uncertainty about the future and constant change is stressful and sometimes just saying that out loud is helpful. I don’t like unknowns, I admit it. I don’t think well on my feet, so when I don’t know details of an event, for example, the unknowns can stress me out. I also find I’m more productive throughout the day with a schedule, and last minute changes can throw me off. I have found it helpful to acknowledge my emotions, and avoid dwelling on what I can’t control by accepting that there are some things out of my control. I’ve also learned to place trust in myself. I have experienced significant periods of uncertainty in my life (aka, cancer) and I’m still standing. I trust that if I can get through that, I can manage anything. Trusting I can get through the uncertainty results in trusting that I can handle the fall out of whatever comes next.

Step 2: Embrace the unexpected free time

When events are cancelled embrace it and fill it with things you typically may not make time for when life is hectic. Maybe it’s binge watching a show, taking a day trip to a state park, or even cleaning out a closet. Adjust your mindset from the disappointment of change to embracing the opportunity to suddenly do whatever your heart desires. Ideas may not readily come to mind in the moment, so plan for opportunities of a changed schedule. Similar to a bucket list, perhaps create an unexpected free time list of things you’d love to do when you suddenly have time to yourself. Pull out that list when something is cancelled to bring you from being stuck in the disappointment to embracing the free time.

Step 3: Set boundaries

When life throws a curve ball, know what is important to you, and what is definite on your schedule. Imagine that you made an appointment and someone comes along saying that they need you to do something asap, which conflicts with your appointment. Hear this loud and clear: someone else’s procrastination does not have to be your emergency. If it’s important and you can accommodate, then great. You can plan and be flexible! If the request does not fit your schedule, perhaps saying, “I’d like to help (or do X), but I’ve already got something on my calendar.” Then, discuss an alternative time, or a deadline for their request. Not only is this okay, but it is healthy to have boundaries in your life with communication in a respectful manner.

Step 4: Reduce stress

When you navigate the first three steps you will naturally reduce the stress that occurs with uncertainty, but regularly managing your stress level will also help you manage the changes that pop up. Imagine in are in a bubble, calmly going about your life. Just outside the bubble is chaos…you can see it, you know it’s going on, but you don’t have let it impact you, or invade your bubble. When you practice stress reduction on a regular basis you can have a sense of calm despite the chaos, uncertainty, and changes. Yes, of course, there are times when you will feel stress or lack of control, but that’s a cue that you need to take time for self care and reinforce your bubble. Some of the simplest, yet effective, ways to reduce stress are; journaling, laughter, and deep breathing.

While I list these as steps, they are really all linked together. More like stepping stones that you can hop to in various combinations. I invite you to take a look back at a couple of older blogs I wrote, Are You on the List and The Heart of Self Care where I dive deeper into stress management. Whether you are an ultra planner by nature at any time, or trying to manage the pandemic changes and uncertainty, making decisions and re-routing is better than standing still. Step forward, my friend!