RAIN and Self-Compassion

Life is crazy these days.

Crazy.

That is the word I keep coming back to over the course of the last month, weeks, and days. It’s even applicable to hours and minutes. It is difficult to escape because our lives have transformed to the confines of our own homes. The top story on local and national news now is the entire broadcast. Attempts to escape real life and watch a show on TV is interrupted with advertisements about how life has changed. I fill my time fairly successfully. The day still can feel long when I’m isolating alone. It’s almost too much.

I am tired of feeling stressed, overwhelmed, worn out, or numb by life these days.

Tara Brach is a well-known psychologist and author. Her work blends together Western psychology and Eastern spiritual practices. She is huge in the world of meditation and mindfulness. One of her main tools is rooted in the acronym RAIN and is a way to connect with self-compassion when experiencing emotional difficulty.

These crazy times have their share of emotional difficulty. My plan today is to share more about RAIN and how it works.

R – Recognize what is happening.

A – Allow the experience to be there, just as it is.

I  – Investigate with interest and care.

N – Nurture with self-compassion.

R – Recognize what is happening.

What are the thoughts, feelings, and behaviors affecting me right now?

Me: I am PISSED OFF about all my plans falling apart. A Triple F would fit nicely here. Travel, birthday, entertainment, and fundraising plans have been canceled. My birthday isn’t canceled but I’m starting from scratch. Whatever alternate plans I make may also get scrapped in the end. Workouts and book clubs are all experienced remotely. It’s depressing.

I feel like I’m not living and there was a successful effort to live each day fully before life shifted to being safer at home. I feel like a blob. I ate quite nutritiously for the first few weeks and now I’m seeing behaviors where I’m eating out of boredom or stress. I’m grabbing sugar over healthy nutrients. I moved around tons for the first few weeks and now that behavior has taken a bad turn as well. I feel sickish a lot of the time due to these behaviors.

A – Allow the experience to be there, just as it is.

Nothing is being fixed or avoided. Emotions and sensations are allowed to just be. Fear shows up here often.

Me: Yep, I’ve had the fear, I’ve had the tears. Mostly anger. A lot of disappointment. There’s worry and anxiety. Allowing is a good term for this part of the process because I can’t fix any of it if I tried. I am in a frozen state of numbness where I’m allowing and waiting.

I – Investigate with interest and care.

This may show up as what you are experiencing in your body or beliefs. Is my stomach in knots? Does my heart feel heavy? Has my breathing changed? What thoughts or beliefs match where my body gives its attention?

Me: I feel exhausted with all the nothing. There are times I let out the heaviest and longest sigh I have. My legs feel heavy. I wonder if I have weights attached to them as I climb the stairs. The mad, sad, bad feeling is over my heart. My stomach feels icky.

N – Nurture with self-compassion.

What do I need? How can I give myself the space to show myself understanding, comfort, and self-compassion?

Me: Based on what I’ve written, it appears that my heart, solar plexus, and root chakras are out of whack. These areas have corresponding body parts that are causing me grief and crying out for help. I can do some targeted yoga to support those areas and myself. I feel much better on days I can get for a walk outside and have some time in nature. Exercise nurtures me a lot. Sometimes physically putting up my hand and verbally saying “stop” is useful when negative self-talks takes hold. To me, nurturing is the most important part because nothing changes if I do nothing with what I’ve recognized, allowed, and investigated.

The first three really identify what’s going on. The last part makes sure I nurture, tend to, and take care of myself. I’ve heard the nurturing step is often not completed because people don’t know what to do. Someone I know suggested that if you don’t know how to do the last step, think about how someone else you know would do it. Choose someone you view as wise and compassionate. Visualize what they would do and then apply it to your situation.

Other ideas that work for me are one or more of the following:

  • Drink some water. Hydration is a good way to reset.
  • Walk around a bit. Keep blood and oxygen moving. Stretch. Kettlebell work usually does the trick, but kettlebells aren’t always handy.
  • Oxygen flow is again the focus. Take full, long, slow inhales and exhales. Breathwork is the simplest fix to support physical and emotional changes. It can improve mood and is thought to boost immunity.

As you know, I’m all about finding a way. Walking myself through the four parts of RAIN is one way to support myself, guide myself, and work with my feelings so I can lessen the crazy and emphasize something more grounded. Crazy is too hard to maintain. Grounding offers something calmer and more stable. I don’t know about you, but I could use calmness and stability during times where there are no solid reference points and prolonged times of uncertainty and unknowns.

Making A Run For It

I am not a runner.

The only thing about me that runs is my nose as a side effect from treatment.

I hated running in high school. Every step of the yearly running test was agony. It made me feel like I wasn’t good enough because I never did well and always walked some.

At the end of 2019, I saw a comment from one of my friends who works at the UW Foundation who has been a main support to me as I’ve worked to raise more funds for metastatic breast cancer research. She had written a supportive comment on someone else’s post promoting a 5K race for UW Carbone.

The race is on May 30th.

My birthday is on May 30th. My 50th birthday.

Uh-oh.

Thoughts are faster than any runner. I knew in a flash what was happening. My thoughts are italicized.

 Don’t even think about it.

 You are not a runner.

 Don’t be ridiculous.

You don’t enjoy running.

You can’t do this. You have metastatic breast cancer. 

You have never run a 5K.

You haven’t even tried.

Because it’s insane.

You’re insane.

But you’ve seen this information and you can’t un-see it.

 The idea is already there that it would be an awesome way to greet your 50th birthday in victory. It sure would show cancer a thing or two.

It also would be a miracle, but you’re a lot stronger than you were last year. 

You know what happens once an idea has already rooted. 

It grows. 

Dammit.

You’ve envisioned crossing the finish line.

You’re apparently doing this. Keep it to yourself so others don’t think you’re unrealistic, too ambitious, or crazy.

What’s wrong with you?

I started doing some research on 5K training schedules. I learned most schedules intersperse running and walking and eventually phase out the walking. I would manage by building my abilities slowly.

On days that I didn’t strength train or walk outdoors, I worked on my running plan, slowly building endurance and running stamina and keeping the embers to do this burning inside me.

I also started working with a running coach. Get this – it turns out I already had a perfect gait from my gait analysis and good rhythmic breathing. Who knew?

I might be a runner.

My mind throws obstacles in my way. It’s really good at that. A sliver of doubt that sneaks in has more weight than all my positive affirmations, mantras, and visualizations. It shakes my goals. I struggled at home on my treadmill in extending my running minutes and lessening my walking recovery minutes. Breathing was harder to manage. The fun phase was over. I realized all the hard work that lay ahead.

Ah-ha! I knew it wouldn’t last. It would be best to give up and enjoy something easier.

 No, it wouldn’t. Stick with this and figure it out.

Be stubborn. Rely on that irrefutable strength. Being stubborn is more important than your physical capabilities right now.

 I am in this for the long haul.

It’s time for another session with your running coach.

More physical obstacles showed themselves. I broke out in a rash fairly early on in my efforts training on my own that kept coming back every time I ran and got so hot. It was exercised induced. My body eventually accepted what I was doing to it.

Take that body. I won.  

I officially registered for the Race for Research at the end of January and formed Team 50. My heart felt choosing Team Pokey for a name was a better fit, but I wanted to keep messaging consistent with messaging from other fundraising goals.

My running coach wrote out plans for me. I worked on interval training mixed with strength work. I would vary the speed and incline, hop off the treadmill and do some lifting drills that runners do, and then repeat for 5 times. I was amazed at what I could do.

I practiced progression runs of varying paces and runs with varying inclines. I could do them. It was a challenge, but I could do them. It made me feel accomplished and athletic. Feeling athletic in the midst of metastatic breast cancer is not me. Feeling athletic was never me.

Except athletic has become me over the span of six months.

Okay, semi-athletic. Keep it real.

I worked on treadmill progressive runs, inclined runs, surge runs, and made it outdoors a couple of times. I was hitting a 5K fairly easily on my treadmill. Then COVID-19 hit. One by one, my plans disappeared. The Race for Research is the last event standing and I suspect it will either become a virtual run or be rescheduled for fall. Gathering cancer survivors, those being treated for cancer, as well as their supporters together at a crowded event, even if it’s outside, doesn’t align with physical distancing. The UW Carbone Cancer Center will make the choice it needs to make.

It will be a major disappointment, albeit necessary.

It is a miracle I’ve even endeavored to run. I experienced hand-foot syndrome several years back which made walking extremely painful. Neuropathy has been present at some level since my original chemotherapy. I ignore it. I’ve worked really hard to get to where I am.

If COVID-19 sidelines the race, it will not sideline me. I have mapped out a 5K loop in my neighborhood and will run it on my birthday. I’ll invite a few friends to come cheer me on at various points along my route (all six feet apart – more like six blocks apart). COVID-19 will not take it away from me. It may take away my VIP status and prevent me from speaking at the race about the deep hope I have for research at UW Carbone, but it won’t take away what I’ve been working for, sweating for, and fighting for since December. It can’t take away the hope I am always striving to give others.

No way.

If you know me, you know I will find a way to get this to happen and make the best of it.

I’d love to say I’ll do it rain or shine, but if it’s rainy I’ll postpone my moment in the sun for a time when it truly will be a moment in the sun. I’m stubborn but not completely crazy.

I have been unknowingly making a run for it for many years.

I have been a runner all that time.

I won’t stop running.

I am a runner.

Watch me.

 

April 16, 2020 update: The Race for Research has been canceled. It will return on June 5, 2021. Onward to Plan B for me.

A Week in Flowers

My writing life suffered this week. I originally planned a series of posts exploring the topic of fear and how I approached fear as someone living with metastatic breast cancer. Everything has been turned upside down in the midst of the COVID-19 pandemic and I struggled. I struggled with a lot of things. I stared at my drafts. I couldn’t get anything to work.

I was at a loss for words.

I felt lost.

One way I dealt with my feelings the past week was to post a photo a day of a photo I had taken that brought me joy. I can lose myself in pictures in a good way. No words are needed. It was my way of offering a positive distraction to the Facebook world when so many posts were centered on fear, sadness, misinformation, and politics.

And so I offer some floral sunshine of some favorite photos that make me feel happy. They restored some brightness and light. I find them reassuring and supportive. They give me a sense of hope and peace. May they do the same for you. Lose yourself in them. Find a favorite.

Find a way.

Always.

Champagne Wishes
Champagne Wishes
Bee at Work
Bee at Work
Raindrops on Roses
Raindrops on Roses
Good Morning Glory
Good Morning Glory
Have a Nice Daisy
Have a Nice Daisy
Lots of Lilacs
Lots of Lilacs
Blooming Like Madness
Blooming Like Madness

 

Balance and Tightropes

A hush falls over the crowd. Lights are dimmed and all eyes in the big top are fixed upward. Suspenseful music keeps everyone in a trance where they don’t dare look away. A man dressed in a white leotard and a billowing white blouse inches across a wire. He holds a long pole stretching out at each side to help establish some sense of equilibrium. Finally, he makes it to the other side. The man bows dramatically to the applauding audience below, but he isn’t finished. He attaches a small round disc to a pole that rises up over his head. An equally bedazzled woman climbs onto his shoulders and positions herself on the circle where she exhibits grace (as well as a lot of trust to her partner) while performing carefully orchestrated yoga poses while the man makes his way back to where he started. The two execute a carefully choreographed dance in a beautiful example of synchronicity, faith, and above all else . . . balance.

Tight rope walkers balance beautifully and skillfully. Their world is high above on a thin steel wire. They make their work look effortless. From below, their balancing act is often stressful to watch.

Our tightrope walkers take their time because it matters to be careful and pay attention to detail. It takes training to do it right. It also takes training for us to walk our metaphorical tightropes successfully. Finding balance in day to day life can be as challenging as on the hire wire.

Finding balance is all about figuring out what you value and then aligning your activities and time spent on those values.

I am clear on what I value and have successfully matched those values to chosen activities. It’s tougher to manage my time so I stay balanced and am not overwhelmed.

Finding balance while living with cancer challenges me almost daily. It seems these days treatment and health appointments are scheduled almost weekly. I spend time on some aspect of fundraising for more metastatic breast cancer research almost every day. Focusing on it can consume a lot of my time. It is exciting, worthwhile, and entirely my choice. It also stresses me out.

How do I fix it? I won’t stop my fundraising efforts. I am getting good results even though it is taking a lot of time. Hard work and effort yield positive results. The solution could involve less blogging, but I don’t want this to be the case. Oncology medical stuff gets a lot of my time. Both blogging and fundraising are taking the majority of the time I have left. I’m not balanced. FYI – if there is a week where I do not post, I am more than fine. It means I just needed a break. Something has to give. It isn’t going to be me.

Spending more time in nature is going to be a conscious effort on my part.

Reading is going to be scheduled, which makes me feel a little too structured, but I need to do it in order to create more balance.

Working out will continue to be a priority.

I am going to schedule downtime and just BE.

Doing some sort of meditative practice again will help. Even if it’s only five minutes a day, the benefits will affect everything else.

Accepting help will also be good. I can think of two examples where I recently did this and I was okay not controlling everything.

One powerful word that I’ve found to give me more personal balance is the word NO. Leave work at work. Respectfully decline an invitation if you have no other plans than not having any other plans. It’s perfectly acceptable to say no without having to explain or justify your reasons. Not explaining is freeing. It goes something like this: “No, I can’t make it. Thank you.” It’s polite and firm. It’s worth asking why anyone really needs more information if you have already said no.

“Balance is not better time management, but rather better boundary management. Balance means making choices and enjoying those choices.” ~ Betsy Jacobson

Holding boundaries I have set with others will absolutely help me achieve more personal balance. Boundaries define what I will accept from others. They reflect how I show love to myself. When I apply the idea of boundary management to myself,  I still believe there is time management involved. How I choose to spend my time and energy is important.

Balance is a mixture of boundaries, priorities, choices, and time. How much of my day is reasonable to dedicate to writing and fundraising? My plans are to exercise in the morning, do whatever my work is that day in the afternoon, read at night. Yes, I’ll need to be flexible, but one day isn’t going to be consumed by anything – unless it’s a medical day. Those are still pretty consuming.

Squirrels know how to balance really well. Those darn creatures scamper across telephone poles with speed and ease. What makes this so? Does the squirrel lead a balanced life? I’ve always thought it must be rather monotonous. All they do is dig and bury things, chase one another, and run on wires. They dash out into roads and dart out of traffic just in time. They try to get into my squirrel proof bird feeder to no avail. Is this the squirrel version of work, play, and risk-taking? Maybe they have it all figured out.

I don’t think squirrels know more than I do. My brain is considerably bigger. I think the telephone wire is much like the sidewalk. It’s all proportional. I don’t fall off the sidewalk just as the squirrel doesn’t fall from the wire. But I still feel like I lose my balance from time to time.

We all lose our balance. It’s inevitable, and when it happens, it’s important to reset to your own vibration and needs and not to someone else’s. A person living well with cancer will be balanced differently from someone else. I know I keep searching for an answer on how this best works for me. It changes a lot.

The goal of finding balance is not to be a tight rope walker walking without a net and balancing someone on your shoulders while juggling bowling balls. The goal of finding balance should be to be mindful of what you are choosing to do with your time and feeling a lightness with those choices. I want to stay in that space where balance and lightness meet. Some call it peace. Some call it happiness. Some call it breathing. It all circles back to loving self-care so you don’t have to feel like you’re walking on a tightrope. Leave that balancing act to the professionals.

Still in Treatment Bells

Yes, the title is correct. I have read a number of End of Treatment Bell posts over the years. This one has a twist.

Today’s post may be unpopular and upset women and men dealing with metastatic cancer. I am sorry if my words cause distress. There is enough of that in your life and mine. I welcome respectful comments and will respond respectfully in turn.

For those readers who aren’t familiar with an end of treatment bell, it is a bell rung by patients at the end of a final treatment to celebrate the occasion.

If you are a new reader, it’s important to know I’ve had metastatic breast cancer from the start of treatment back in 2012.

Prepare for Controversial View #1.

There was a time when I actively advocated for bringing one of these bells to my treatment center. I supported it for others even though I had metastatic cancer. Even if I would never ring it, I wanted others to have the opportunity. I truly didn’t think hearing it would bother me. I thought I would equate the sound as hope for someone’s future. My intentions were good. I didn’t understand the arguments I read from others because my perspective was different. My plan was to set benchmarks in time and ring it purposefully at those points in time.

I didn’t understand.

I have read. I have reflected. I have changed my opinion. I am deeply sorry I haven’t understood and that it’s taken me longer to get where so many are in their beliefs. I was wrong. I am grateful that the idea for a bell was rejected.

I was told no for the exact reasons so many others have mentioned: Some patients would never get to ring it. It would not be sensitive to their needs.

I have read other reasons on social media from those who do have to hear the clanging of end of treatment bells where they receive treatments and these brief accounts have been gut-wrenching to read. There is trauma in the sound that is beyond painful and harsh. One description compared it to being kicked in the teeth. My perspective has changed. Hearing these bells now would make me feel discouraged, depressed, and envious. One person’s celebration would be my despair. I would not feel good about these feelings or thoughts.

I believe the initial intentions of these bells were good, but also that the decisions were not well thought through and inclusive of all patients. The repercussions have not been positive for everyone. I haven’t read anything about end of treatment bells being removed from treatment areas that have them.

Prepare for Controversial View #2.

Ring the bell.

Ring the bell every chance you get. Ring it when you arrive at your office visit appointment, after your office visit, when you enter the treatment area, and when you finish treatment.  Ring it SEVERAL TIMES DURING ONE VISIT. Ring it because it wasn’t intended for us. Ring it because we weren’t valued in the decision.

My point is if they can’t see us (those with metastatic cancer often are the unseen patients in news or fundraiser campaigns), then we are going to be heard every opportunity we have.

Change the meaning of the bell. It would either become meaningless because we are removing its purpose . . . or something else could happen. Is it completely crazy to think over time a shift could occur where the only people ringing the bell would be stage IV metastatic patients? Could ringing it become a reminder that 30% of patients will become metastatic if more research isn’t dedicated to more effective treatments, medications, and a cure for us? Could it be recognition that 10% are already metastatic at the time of diagnosis?

There are die-ins. Protests. There are many forms of advocating for change. A Still in Treatment Bell could be one more way to use our voice.

Does changing the word end to still make you feel differently or pretty much the same?

Ringing the bell would likely not be welcomed. Good. Let more research happen and then maybe no one has to hear it ring. I really don’t want to ring it but I will ring it with a vengeance if one ever appears where I receive treatment.

I imagine I’d shout, “MORE FOR STAGE IV” as I ring the bell. No rhyming poem. No plaque. No explanation. Just a clear and emphatic shout for what is desperately needed.

I imagine I might be told:

“Please don’t ring the bell. It’s for end of treatment survivors.”

“That bell is not for you.”

“The other patients feel uncomfortable with the constant ringing.”

“You are ruining it for other patients.”

 

How I’d hope to respectfully respond:

“Wouldn’t it be something if no one had to ring the bell? More research is needed for all of us. MORE FOR STAGE IV.”

 

Cancer has changed me. There are times I feel like I’m going nuts. Maybe I need to embrace it and live more of the way I feel.

What does that mean?

It means I should bring my own damn bell to ring at treatments. Maybe I will.

 

Consider responding:

  • How have conversations you’ve had been received in places where bells are present?
  • What are your thoughts on still in treatment cymbals?

Instead

Today’s theme is based around the word instead. I cannot fathom why some wrong ideology continues to persist around breast cancer and breast cancer awareness instead of shifting to concepts and vocabulary that is more truthful.

Exercise and nutrition do not prevent cancer any more than they can cure cancer.

Instead . . . exercise and nutrition reduce risk and can improve anyone’s health. This is true for reducing the risk of heart disease, diabetes, cancer, and any number of diseases, but it is not a guarantee.

Don’t tell me I look good, or even worse don’t say that I’m pale, look tired, or must not be feeling well. I realize my summer pale shade will fade to my usual pale, but pale is how I look. I’ve been pale my entire life.

Instead . . . tell me it’s good to see me. It’s very welcoming and removes all assessments of how I look or how I’m feeling. It’s that simple.

Promoting mammograms and early detection as saving lives is not accurate. 30% of early stage breast cancers go on to become metastatic. Mammograms and early detection are not cures. There is no cause and effect relationship between early detection and assured survival. Identifying breast cancer at an early stage is certainly preferable as to when it’s already stage IV. There is enormous value in finding it early. A person has a shot at a normal life. Mammograms are neither prevention nor a cure. They do not catch all breast cancers and they do not catch all the ones that they do at an early stage. Mammograms do not reduce risk. Mammograms are good, yet imperfect, diagnostic tools.

Instead . . . people must be informed so they know the chances of recurrence.

  • 30% of cases will have a recurrence. Forgive the repetition.

One reason metastatic breast cancer, or metastatic cancer of any type, is difficult for people to learn about is it’s scary and no one wants to think it could be them. People who have finished formal treatment want to be done. They use the words cancer free and cured freely. There is no way of knowing how I’d feel if I had been diagnosed at an early stage because it wasn’t my reality, but I think I would have been mortified if someone kept shoving the statistics and signs of MBC in front of my face when I was doing my best to be done with it. And shoving is what I imagine it would feel like. Maybe it’s a similar feeling to how I feel when the barrage of pink comes my way almost every blasted day in October. I want it to go away and leave me alone. If I want something pink, I will buy pink flowers or drink Pepto-Bismol.

Instead . . . we all need to be more compassionate and respectful. I include myself in this statement because I can have a tough time understanding how some friends and family just don’t get it.

This idea of otherness rather than togetherness is one reason why there are separate support groups for earlier stage survivors and those with stage IV. Out of sight, out of mind. Different conversations. True, yet some of those conversations are worth having together. If not together, there must be a way to provide information about warning signs. Those with earlier stage cancer do not want to think about cancer returning or it turning metastatic. They want to believe they are cured. There is no such thing. There is remission. There is hope that it is in a person’s past. Hope is not to be underestimated. For many, it will be in the past. It won’t be for that 30%. That’s roughly 1 out of 3 survivors.

Instead . . . people need to be educated so they know what warning signs to look for.

Signs of metastatic breast cancer to other areas may show up as the following symptoms:

  • Brain – Frequent headaches / Vomiting / Dizziness / Impaired intellectual functioning / Mood swings / Balance issues / Fatigue
  • Bone – Bone pain commonly felt in back, arms, ribs, or thighs with no obvious cause.
  • Lymph nodes – Swelling in chest, armpits, or neck areas.
  • Lung – Sharp pains when breathing in / Fatigue
  • Liver – Pain near ribs on right side / Bloating / Weight loss / Changes in appetite / Fatigue

Patients often feel like they need to agree unwaveringly to everything their doctor suggests. They fear they will be labeled as difficult, have less time spent on them, or that they will receive subpar care if they disagree with management. I hope not.

Instead . . . patients must ask questions and be their own best advocates.

Here are some possible statements and questions:

  • I don’t understand. This information contradicts something else I’ve been told. Here is what I’ve heard/read. Can you explain it to me again?
  • What are the risks of this treatment? What are the side effects?
  • Why is this recommended for me? Is there something else to try?
  • Are there clinical trials here or through another clinic/center/hospital?
  • I need (fill in the blank – a hopeful approach, a second opinion, more information, less information, stronger meds, different meds, different communication, etc).
  • I am experiencing (fatigue, neuropathy, lack of appetite, depression, etc.). What can I do to address it?
  • That isn’t what I said/asked. Let me try again.

When someone dies from breast cancer, sometimes the phrase “from breast cancer complications” is used. It seems to be one of many hot button phrases this fall.

Is metastatic disease a complication?

Reporting death as a result of breast cancer complications needs to stop. Many illnesses that can be fatal can be brought on due to low white blood counts because of a weakened immune system from treatments. This includes the flu and pneumonia. Organs like the kidneys, liver, and lungs fail or shut down. Organ failure is not a complication. Metastatic cancer is the only kind of cancer people die from. My opinion is they don’t die from it so much as they are killed by it.

Instead . . . say killed. Metastatic cancer kills.

Breast Cancer Awareness Month gets under my skin more each year. I don’t think I’d mind awareness so much if it had the right drivers.

Pink products do not cure cancer. They do not appropriately fund (or fund at all) research. They do precious little to raise awareness. Awareness should not be tied to pink merchandise with no other messaging than a color. Do I want a glittery pink dog on a t-shirt? I do not. Is a pink mug with some clever slogan going to make my treatment more effective? It is not. What does all this pink do?

People buy these products in the name of awareness and they are unaware that very little goes to research, and that an even smaller slice goes to research for metastatic breast cancer. Do your research and know how your donation to any charity or foundation where you contribute is being used.

Instead . . . when you see pink merchandise, respectfully inquire about where the money is going and how it’s used. Then educate about other alternatives that support research.

Pink isn’t even applicable to me. It’s as if I’m excluded from the very awareness month that should recognize me.

And there it is.

I don’t truly belong because I don’t have breast cancer.

I have metastatic breast cancer.

Many in the MBC community feel royally miffed (including myself) that there isn’t more of a focus on metastatic breast cancer during October, and I think I’ve figured out that perhaps the intention was never to focus on us. We get a day out of the month. This year it was Oct. 13th.

Thanks?

The colors for metastatic breast cancer are green, teal, and pink. Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality. Teal symbolizes healing and spirituality. The pink ribbon represents that cancer originated in the breast. I don’t want a ribbon, or a bracelet, or a t-shirt.

Instead . . . I want the money spent on those items to go toward research for more treatment options for metastatic breast cancer. After a quick internet search, I discovered I could buy a pack of 50 pink breast cancer pins ranging between $40 to $50. How many of those pins are out there? You do the math.

Now, consider the mugs, bracelets, t-shirts, and other pink nonsense.

Next, consider what might be possible if the money spent on all those products were directed to stage IV research.

Stage IV needs more.

Rather than buying pink products, you can donate to my Nifty 50 Fundraiser. 100% goes to metastatic breast cancer research at UW Carbone (also known as the More for Stage IV Fund).

Do that instead.

The Lesson of the Milkweed

Crunchy leaves cover a hard ground. A gray sky creates a contrast against the bare branches. The air is chilly. Autumn is a season that doesn’t scream softness. Softness is there. I have been surprised to discover it in unlikely places this fall. Sometimes it’s harder for me to find, but it’s still there, waiting for me to find it.

October needs softness because Breast Cancer Awareness Month bombards me with hard. Awareness is hard. Pink is hard. People who appear to celebrate the month make it hard. And then there’s me because I can make it hard on myself.

I go for a hike when I can to exercise and relax. It sounds like a contradiction, but exercise in nature achieves both for me. Pheasant Branch Conservancy is one of my favorite places to walk and a source of joy. I ventured there last week and stopped in several places to open up milkweed pods. They are remarkably soft. An older gentleman with a shock of white hair noticed what I was doing and wandered over. He joined me in releasing milkweed seeds into the breeze. There we stood, watching the wind carry them away. He laughed and that was one of the best parts. He told me about milkweed bugs. Then he drifted away, kind of like a milkweed seed himself. I did the same in another direction.

Opening milkweed pods is a beautiful example of finding softness this month. A rough outer exterior protects silky soft seeds that float away in the wind. Opening them as a child and watching them dance and fly was pure joy. It made me feel like I was encouraging their quest to find a new home and witnessing it happen. It still does.

This year, October 13th is Metastatic Breast Cancer Awareness DAY. It’s a prime example of some hardness for me. Yes, a whole day is set aside in breast cancer awareness month for the only kind of cancer that kills. It’s also Yorkshire Pudding Day. Here are two facts on this special awareness day:

  • 116 women and men a year die every day from MBC.
  • There are around 155,000 people living with MBC in the U.S.

 

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Milkweed seeds at Pheasant Branch Conservancy

 

I need more milkweed seeds. Lots of them.

Sitting in front of my fireplace on the first few evenings when it’s cold enough is another time when softness settles around me. There is softness in the glow and I feel wrapped in warmth. Those first fires of fall are extra special because it sets a toasty tone for fall.

Here are a few other favorites:

Savoring hot tea, coffee, and hot chocolate again.

Hanging around my house in my plaid flannel pajamas.

Snuggling under warm blankets with a good book.

Immersing myself on a trail in the woods while surrounded by trees that have exploded in color.

These actions are a vital part of self-care and letting myself know I am important. They are all external examples even though I have a part of them.

Self-care is super soft. I need to look for soft places within myself, too. Softness must be internal. I can find soft places within when I slow down and enjoy the moment. Rushing isn’t worth much. Other ways I can practice self-care are by showing myself empathy and understanding, forgiving myself when I make mistakes, and allowing space for my feelings. Negative self-talk is hardness; compassionate self-talk is softness. Self-care is love.

Cancer causes hardness because no one comes out completely unscathed. It’s exhausting. Some hardness is on the outside, some on the inside. You carry outer and inner scars. Cancer visibly ages a person. A person develops a thicker skin and smiles when insensitive comments are made. Many experiences and conversations are difficult to endure and process. You emerge from treatments feeling battered, fatigued, and having experienced traumatic physical and/or emotional changes. If you’re metastatic, tolerating toxicity is ongoing. None of these are soft images.

There is so much talk about being strong and fighting or battling. Strength is a double-edged sword. I am strong. I work on physical and emotional strength. The hero Odysseus was a recurring reference in high school among my friends because he was rough, tough, hard to bluff, and used to hardships. I’ve channeled Odysseus’s strength regularly over the time I’ve been living with cancer to move through hardship after hardship. The strength you call upon each day to make it your best is empowering strength. Your strength is weakened when it’s exerted in battling and fighting cancer, or people and attitudes that go against you. I need to focus on the strength that empowers me and not waste it in battle mode. My strength goes toward empowerment and living.

Fall is a wonderful opportunity to let things go. Trees let go of their leaves with ease. Fall can be a time to let go of hard things. Letting go is hard because changes usually are difficult for me. Still, my life will be easier if I only let go of one hard thing. Letting go of many could bring more happiness to my life. What will it be?

Consider responding:

  • What can you let go of this fall?
  • Where do you find softness in nature?

Reclaiming October

Breast Cancer Awareness Month is almost here. An inundation of pink will accompany promises that a cure is just around the corner and that change is imminent. Everywhere you go, there will likely be some campaign to raise awareness with the belief that a contribution to the cause will go to research that will find a cure. It all will be so happy and upbeat because pink is pretty. Some will reminisce and post photos of life going through treatment and compare before and after photos. The media will highlight survivor stories.

Fine.

Really.

I am not trying to take away from someone else’s survival. There is room for everyone. I am trying to shift the focus and include a greater focus on metastatic breast cancer.

I know I am beautiful but I don’t post before and after photos because I still wear my wig. There will never be after photos for me because I will always be in treatment. I do hope to ditch the wig. I don’t think there is a lot that’s pretty about what I go through month-to-month, or even week-to-week. October is a tough month. It’s hard like a brick wall.

But I’m a wrecking ball.

Here I come.

I am gearing up for one hell of an October.

I’m taking the month back and making it about metastatic breast cancer. It’s a golden opportunity to put MBC in the spotlight.

I am renaming it Metastatic Breast Cancer Action Month.

#ActionMBC

Throughout October (and beyond), I will be taking action directed toward change. I will tweet, post, blog, and talk about the facts of MBC in attempts to create visibility and push for more attention, funds, and research to be directed toward this group of the breast cancer population. I’ll write letters and talk to anyone who will listen.

It’s vital I reach people who know little about this world. Many do think awareness is the way to end cancer. I disagree. Giving people accurate information about metastatic breast cancer is part of recruiting support for needed change. Facts on MBC will become tweets and posts. A few unsolicited opinions may be inserted. I’ll also display them on public bulletin boards and maybe even plaster them on bathroom stall doors to provide some meaningful literature in all of the finest restrooms I frequent. Yes, I did just write that. A person might as well spend a couple of minutes learning while occupied with bathroom business.

It amazes me how people don’t know some of the things I thought they would. They may even work in the healthcare industry and still be somewhat uninformed about the effects of metastatic breast cancer. They may be survivors and completely oblivious about the chances of recurrence. I don’t understand everything there is to understand about cancer. It’s my opinion the general public doesn’t have accurate information on secondary cancer and I would like to reach this audience.

Preaching to the choir doesn’t do much. Providing information to people who don’t even sing has the potential for change.

I want to provide information this month that:

  • Metastatic breast cancer is with those of us who have it for the rest of our lives. We will still have it after October.
  • No one has done anything to get cancer. It affects people of all ages, races, sizes, education levels, languages, and incomes.
  • People who have gone five years being free from cancer after treatment ends can still have a recurrence and develop metastatic cancer.
  • Metastatic cancer kills people.
  • 10% of patients already are Stage IV upon diagnosis like I was.
  • 30% of earlier stage breast cancer patients will become metastatic.
  • There is no way of knowing whether a patient’s cancer will metastasize.
  • It’s projected that 116 people per day will die from metastatic breast cancer in the U.S. in 2019. Five of those who die each day will be men.
  • The bulk of breast cancer donations go toward prevention and early-stage research. The percentage of donations going toward MBC research is typically in the single digits.
  • People who have any type of cancer, or have had cancer, or are labeled as having a pre-existing condition, deserve health coverage from insurance companies. Affordable health insurance is a basic human right.
  • Awareness and prevention programs have done nothing to lower the number of deaths from MBC.
  • We need more research, more treatment options, and more effective treatments for metastatic breast cancer.

We need more attention from others outside of the metastatic breast cancer community. I often feel like we are shouting from the rooftops from only our own village. It takes more than a village. It’s going to take all the villages.

I regularly hear that we need more research devoted to metastatic breast cancer. It’s often my own voice I hear saying it. I’m not just talking the talk, but now I’m walking the walk. A few months back I created a fundraiser through the UW Carbone Cancer Center where I receive treatment.

Click here to access my fundraising page. My plan is to devote a separate post about my goals for this at the end of the month. I encourage you to make a small donation and feel nifty with me. You’ll see what I mean after viewing my page. Don’t delay. Don’t put it on your “To Do” list. Once it’s done, it is a proud part of your “Ta-Dah” list. I am grateful for your support.

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Click here to watch a video about UW Carbone.

I am committed to raising money for research.

I am committed to making my voice heard.

I am committed to doing more.

I have plans to speak at several places in the community. My story will be displayed in a couple of businesses in October. I’m busy networking to keep the momentum going after October and for the better part of 2020. All this takes me quite firmly out of my comfort zone. My health often causes me discomfort anyway, so I might as well find ways to show it I am still the boss of me. I can wrestle and rumble with it and make it uncomfortable with me.

 

Please consider responding:

  • Please chime in with other MBC needs that I haven’t mentioned.
  • How can you use your platform and advocate for change this month?

The New Abnormal

Those diagnosed with any form of cancer immediately are thrust into a world known as “the new normal.”

It is anything but normal.

“The new abnormal” would be a better name.

Normal will never happen again for me. My reality of attempting some form of normal for the last seven years doesn’t mean life is normal for me. It means I’ve learned how to exist in crazy. Maybe I should refer to present-day life as my old crazy because I’ve existed this way for so long. The new normal phrase has always rubbed me the wrong way because normal was ripped away and replaced with nothing of the sort.

Is calling what I do the new normal supposed to somehow make me feel normal? It doesn’t. Instead, it makes me feel like I can’t even do the new normal normally. Is it meant to make me or others feel better? It doesn’t make me feel better. I’m not sure if it makes others feel better. It potentially minimalizes what I do in the eyes of others. It invalidates my struggles in what really is abnormal because of the language that this is the norm.

The new abnormal is a topsy-turvy world of back and forth. It’s a world of opposites. I have felt wonderful and miserable.

I’ve gained and lost weight even though my level of exercise has remained about the same.

I’ve had my share of down days plagued with fatigue and others with more steroid induced energy than I know what to do with.

I’ve had no appetite and other times where I’ve eaten everything in sight.

Diarrhea. Constipation. One word sentences here are fine.

The medical world is a potpourri of repeating abnormalities. There are more one word or near one word sentences coming.

Labs. Office visits. Treatments. Side effects. Repeat.

Scans. Anxiety. Regrouping. Repeat.

I call insurance companies and billing departments far more often than is necessary. I rarely did when my life was supposedly normal.

I’ve gotten to feel at home with nausea. Ondansetron works well for me when it hits.

I’ve gotten to feel at home with many other drugs and supplements. I know what works for me and what doesn’t. I know my body well. I think I have finally broken through and convinced my team NOT to give me one particular drug used during MRIs that causes a worsening reaction. Every office visit begins with a review of my long list of medications.

How is any of that normal whether it’s the new routine or not?

In between all of this complete abnormalness are all the attempts to squeeze in any normal moments that are possible. ME time. I exercise and plan activities I enjoy that will keep me moving. Time with family and friends fill in normal moments. Football season has started. Go Badgers! Special occasions are sprinkled into my schedule when possible. There still is meaningful work that matters to me. Whereas my schedule had always been fairly rigid, I love the flexibility I now have. Being able to focus on purposeful work has been one part of my new abnormal that feels pretty close to my old normal.

The only constants are change and the need to live in the moment. Cancer has taught me lessons in change repeatedly. I am more present. It’s why I like #NotTodayCancer so well because I can be pretty definite about certain things as I go through my day.

The new normal is not the right term for how I live. Life is abnormal. Calling my life permanently abnormal is the best fit.

What even is normal?

Revisiting Grief

I ran into a friend of a friend a little over a week ago that I haven’t seen in a long time at a local restaurant. One of the things Laurel and I have in common is that we have both lost people we’ve loved due to cancer (my mother and her husband). She was with a group of about six or seven others. There was nothing remarkable about anyone’s appearance. Everyone looked normal. I stopped by her table for a quick hello as I left the restaurant and learned she was eating with her grief group from hospice. Her husband died around three years ago and although they do not meet formally as a group anymore, she explained they still get together every so often to check in on how everyone is doing.

“So, how are you doing?” I asked her.

“I’m vertical,” she told me.

She looked great. I know. Even though I heard it in my head, it was my first reaction. Looking great has nothing to do with how a person is feeling. I even used the word “normal” above to describe her.

It’s cringe-worthy.

I was thankful I hadn’t said it out loud. I know so well that someone can look like they have it all together on the outside when the inside is a hot mess. This is true whether the inside is slammed with treatment side effects, pain from sickness, anxiety, depression, or grief. The inside often is in some state of constant churning. It may be such a present feeling that it is normal for you. Normal always fluctuates for me and has an overpowering element of uncertainty of the future. Normal has to be rooted in the NOW. I’m good at holding it together on the outside. Most of the time.

Grief is messy.

Being vertical shouldn’t be so hard. But it can be.

There is something comforting about being with others who have similar experiences. Support groups are great for this if it fits your comfort level. I went to one after my mom died. It was more of a workshop setting. It gave me a better understanding of my feelings and explained a few things that I wouldn’t otherwise have attributed to grief. Individual counseling is another option to support someone through grief.

Running into Laurel made me pause to revisit what I’ve learned about grief over the years. I reminded myself of many points worth remembering.

Grief Reminders

  • Grief is physically and emotionally exhausting. A grieving person needs more restorative sleep.
  • Grief is hard. It’s tougher to make decisions and trust others, including trusting your own abilities while grieving.
  • Many question truths in their personal belief systems such as religious beliefs, the meaning of life, and ideas of fairness.
  • There is a sense of having no control over anything.
  • Grief is distracting. Functioning in day-to-day activities or at work can be affected. There is a tendency to forget things.
  • Some people may bump into things, drop stuff, or be prone to accidents. They do not attribute these events to grief and wonder what in the world is wrong with them.
  • Some people find it easier to be at work and like having a focus away from grief, while others find it difficult to be in their work environment. Some who find an escape from grief at work find that it overwhelms them again as soon as they get home where the memories live.
  • Dates such as birthdays, anniversaries, holidays, and other important events will be bittersweet. The anniversary of a death will be dreaded and the day after will feel better again because there is a whole year before it happens again.
  • Grief is real and ongoing. A person doesn’t just get over it. The goal isn’t to get over a loss but to find a way to get through it.
  • People grieve losses other than death. Loss of jobs, a move, divorce, a friendship or relationship, failed plans, and changes in health are all sources of grief.
  • It doesn’t mean someone is over their grief if they are having a good day. They may just be getting through the day vertically.
  • Grief spurts come out of nowhere. They may not last long but can be intense.
  • There is no timeline. There are as many ways to grieve as there are people. What works for one person may not work for another.
  • Grief can teach us about life.

I find a lot of strength in affirmations. I’ve read and collected many, blended them together, and written my own when I have a specific need. I have close to one hundred in my affirmation file and I’m always coming up with more. Here is my group of affirmations on grief. Perhaps one or two will jump out as applicable to a situation in your life.

Affirmations That Acknowledge Grief

I allow myself to fully feel my feelings, both happy and sad.

I can still feel love in the world without my loved one.

I seek the help I need and accept help when it’s offered.

I hold on to love and will let go of the grief when I’m ready.

I am surrounded by seen and unseen love and support.

I am kind to myself while I grieve and heal.

I honor my lost loved one by living my own life in positive and beautiful ways.

I move away from memories that bring me pain and focus on memories that bring me happiness and peace.

Grieving is a part of life and I am doing okay.

There are many feelings involved with grief and loss and it’s okay to feel all of them.

I still feel my lost loved one’s presence and it comforts me.

I grieve loss in healthy ways that are right for me.

There is no timeline for when grieving is done.

Grieving ebbs and flows differently for everyone.

I recognize difficult moments and know they will pass.

I choose to grieve my loss and move forward at my own pace.

It is okay to feel happy again.

Moving on with my life does not mean I have forgotten someone I loved.

I am grateful for the time I shared with my loved one.

This experience has allowed me to discover new truths about myself.

I am done being sad for today and I move on to other emotions.

My life has changed and I will meet these changes day by day.

There are many people I can talk to who will listen to how I’m feeling.

I feel supported during this difficult time.

I am learning how life works for me with these new circumstances.

After I’ve given all this unsolicited advice, I think it’s also important to avoid offering easy answers or clichéd expressions to someone who is grieving. As an example, I often hear people say God needed another angel when someone has died. It’s meant to be comforting. I don’t believe this. Heaven has enough angels. Keeping people around longer on Earth that spread goodness seems like a better idea to me. We need those people to stick around. Someone who is grieving needs to feel listened to and feel comfortable enough to cry and express their feelings with the support of their friends. Telling someone how they should be feeling or dismissing their feelings with some tired or cute remark invalidates grief.

I have grieved my parents and other family members, friends, neighbors, and people I have never personally met who have died from cancer. I don’t think I’ll ever be done grieving some deaths, and that’s okay. It’s there. I can still be happy. I’ve grieved a child and an unfulfilled dream when cancer put a screeching halt on plans to become an adoptive parent. I’ve grieved relationships that have changed. I’ve grieved my teaching career when it became clear it was in my best interest to retire. I’ve grieved my past because I can’t reclaim my life and health to what it was before cancer. I’ve grieved my present because of disappointment and anger and changes that still don’t fit my plans. I continue to grieve my future because of fears. Although it isn’t what this post is about, I also have hope for my future and I will not let go of my hope.

There are many parts of myself that I grieve. I choose to keep many of those thoughts private for now. It’s my work to do, difficult to share, and very hard for me to put into words.

Grief is universal but everyone does it differently. There is no one right way to do it, but it needs to happen in its own time and in its own way. I don’t want to forget my loved ones who have died. I do want to quiet memories that haunt me. I do want to remember all the happy times I’ve shared with people who’ve died.

Laurel is incorporating grief into her life as she keeps living and moving forward. Looking fine on the outside doesn’t tell the whole story. It seldom does. I hope I can meet people with compassion and empathy to offer whatever support is needed.

Three affirmations from my list jump out at me as I write today:

I honor my lost loved one by living my own life in positive and beautiful ways.

Moving on with my life does not mean I have forgotten someone I loved.

My life has changed and I will meet these changes day by day.

 

What are your thoughts on grief?