A Review of 2020

2020 won’t fade soon from our memory and never from history. Too many events were put into motion that will continue to play out for years to come. I suppose that’s always what happens. Some events have already had major impacts on our lives, whereas others may scarcely make a dent in the grand scheme of things. Big and small, this is my look back at 2020.

Nationally and Globally

COVID-19.

All anyone could talk about was COVID, COVID, COVID. Sound familiar? To frame it with numbers, almost 330,000 have died from the virus in the United States as of December 26th according to data provided by the CDC. That number is a staggering reminder of what will be carved forever in the rock that is 2020. I know a handful of people who have had the virus and almost all had mild cases. I am fortunate no one I’ve known has died from it.

Everyone knew who Dr. Fauci was and recognized him as the voice of science and reason throughout the pandemic.

Toilet paper and hand sanitizer became hard to find items. Shelves in stores were bare for months.

Too many people watched and got addicted to Tiger King. I did neither.

John Krasinski gave us hope in his segments of Some Good News.

Many passed the time baking sourdough and banana breads. These and other forms of baking provided comfort in a tangible way to our lives.

Earth had a chance to breathe when the world shut down because of COVID. Fewer cars on the road improved air quality. People used their cars less since many were unable to work or they worked at home. We all win with a cleaner planet.

Zoom. A word that can stand on its own.

People staying home more had some negative outcomes. The unemployment rate reached a record high of 14.7% in April. A rate of 6.7% in November has been the lowest since before the shutdown.  As a comparison, the U.S. ended 2019 with a rate of 3.5%. Many businesses permanently shut their doors during the pandemic.

The Summer Olympics set to take place in Tokyo were canceled and moved to 2021.

Black Lives Matter demonstrations took place across the country to protest police brutality and racially motivated violence towards black Americans. The deaths of Ahmaud Arbery, George Floyd, Breonna Taylor, Rayshard Brooks, and Daniel Prude were a few of the deaths that caused unrest nationwide.

A fly landed on Mike Pence’s head during the only vice-presidential debate before the election and stayed there for around 2 minutes. Kamala Harris effectively and firmly told him she was speaking when he repeatedly tried to interrupt. She was speaking.

Mississippi voted to remove the Confederate flag as part of its state flag and replace it with the image of a magnolia blossom.

The U.S. held a presidential election. It affected people nationally and globally just as COVID did. Donald Trump will be leaving office. Joe Biden decisively won the popular vote by over seven million votes (81,283,485 to 74,223,744 votes) and the electoral college (306 to 232) and will be the 46th president. Kamala Harris will be the first woman vice president and the first woman of color to hold that office. The election was held on November 3rd and results were shared on November 7th. It took days to count the massive number of mail-in ballots.

The first healthcare workers in the United States received the COVID vaccine on December 14th.

The world lost many well-known figures in 2020. I apologize if I’ve left someone out you feel needed to be included. It means I am less informed than I would like to be and their name didn’t provide instant recognition. It doesn’t diminish their life contributions. There are always too many who have moved on. The world said goodbye to these well-known individuals:

Don Larsen 1/1

Jim Lehrer 1/23

Kobe Bryant 1/26

John Andretti 1/30

Kirk Douglas 2/5

Orson Bean 2/7

Ja’Net Dubois 2/18

Katherine Johnson 2/24

Roger Mayweather 3/17

Lyle Waggoner 3/17

Kenny Rogers 3/20

John Prine 4/7

Little Richard 5/9

Jerry Stiller 5/11

Fred Willard 5/15

Carl Reiner 6/30

Hugh Downs 7/2

Nick Cordero 7/5

Charlie Daniels 7/6

Kelly Preston 7/13

John Lewis 7/17

Regis Philbin 7/25

Wilford Brimley 8/2

Chadwick Boseman 8/28

Ruth Badger Ginsburg 9/18

Helen Reddy 9/29

Eddie Van Halen 10/6

Sean Connery 10/31

Alex Trebek 11/8

David Lander 12/4

Natalie Desselle Reid 12/7

Chuck Yeager 12/7

Charley Pride 12/12

If you lost a loved one this year, I am so sorry for your loss.

Effects of 2020 on My Life

I momentarily backtrack my comments to 2019. My 2019 was wonderful. I felt fantastic. I accomplished a lot and brought about many good things in my life. I’m always hesitant to start a new year because there are so many unknowns. It was the same way at the beginning of 2019 but I knew what I had by year’s end. I now know what 2020 has held for me.

My only vacation of 2020 turned out to be a quick trip down to Chicago to visit my friend Emily in early February. It was the calm before the storm. We ate in restaurants. We enjoyed the Shedd and walked around wherever we pleased while the penguins were confined. It turned out those penguins got out more than I did this year. We shopped in stores and touched merchandise we didn’t buy. My glasses didn’t fog up because masks weren’t on anyone’s radar. I could hug her family. It was a magical time.

The entire world was given an extra day of 2020 on February 29th with Leap Day. I don’t think it was needed, but we got it. John Mulaney hosted Saturday Night Live that night and delivered a monologue that I’ve listened to an absurd number of times because I’ve needed more laughs this year. It holds up and is still funny each time I hear it. Give it a listen.

March 13, 2020 was the last time I was social before the initial lockdown. My friend Holly and I were planning on going to Wicked on the 15th. It deteriorated and I bowed out because I couldn’t justify putting myself in a crowd that size for hours. I insisted she take the tickets. She had changed her mind about going when she came to pick them up for reasons of her own. We went for a short walk. The show wound up being canceled so no one went.

Then came the lockdown. I remember thinking a two-week lockdown was not a lot to ask. I thought it would be a little longer. It became clear pretty quickly that it was going to last much longer. Much longer became a lot longer. It was tough as the season changed from summer to fall that it was going to go into winter and into 2021. Here we are almost ten months later.

A good chunk of 2021 will be spent as a continuation of 2020. But I get ahead of myself. Back to 2020.

The biggest events for me personally were turning 50 years old, running my first 5K, and raising over $60K for metastatic breast cancer research. All three were connected. I am proud that I surpassed my fundraising goal. I’m overjoyed I was able to complete my run. My birthday was happy through and through.

Minor events make our lives. I made a batch or two of banana bread. I saw the Neowise Comet in summer. I set up a card table and draped it with a lace tablecloth to host friends for card making and pancake breakfasts. I began having breakfast each morning on my sun porch where I listened to the birds and let my thoughts wander. Other friends came over and we chatted on the backyard patio once or twice. I kept writing steadily. I spent time outside when it wasn’t too hot. I took neighborhood walks when my feet felt okay. Everyone scooted well out of the path of one another with a smile and a friendly wave. I took a lot of photos over summer. That took me into fall where I planned day trips to see old and new spots in Wisconsin and enjoy fall color. Workouts and book club kept me socially connected through Zoom. Meaning and joy rest just as much in the small things as they do in the big things.

Easter, July 4th, and Thanksgiving were celebrated on my own. Christmas too.

On November 10, 2020 . . .  I did a real push up. This is monumental. I’ll be honest . . . I did three. I did not go down very far, but I could get back up and I’m counting those. I achieved my goal of exercising every day this year. Some days were minimal but required more effort when I wasn’t up to it than days when my workout was more intense. What I considered my best depended on how I felt. I did my best every day.

My hair is longer and grayer than it has been in years. Thinner. I’m thankful to have any of it thanks to cold capping. Since these things all go together, I hope the lengthy and gray locks continue to grow.

I still have metastatic cancer to no one’s surprise. My health fluctuates between fair and fantastic depending on my mood, how much I worry, treatments, and time. I’m still here.

I remember people couldn’t wait for 2019 to end and be rid of it fast enough. My 2019 was a rather glowing shade of wonderful. I hoped 2020 would be the same. I understand the desire to move on from 2020 to 2021. Time marches on and we always hope what’s ahead of us is better than what we have at the moment. But each year, even if it has events that bring us to our knees, hopefully also has had a moment here or there where we’ve risen up and basked in the sun. May 2021 have more moments in the sun for everyone. I end my 2020 review with a prayer I found that encompasses every good thing my heart wants for all of us.

New Year’s Prayer

As the dawn breaks on a new year, let us give thanks for all we hold dear: our health, our family and our friends.

Let us release our grudges, our anger and our pains, for these are nothing but binding chains. Let us live each day in the most loving ways, the God-conscious way. Let us serve all who are in need, regardless of race, color or creed.

Let us keep God of our own understanding in our hearts and to chant God’s name each day. Let us lead the world from darkness to light, from falsehood to truth and from wrong to right.

Let us remember that we are all one, embracing all, discriminating against none.

May your year be filled with peace, prosperity and love. May God’s blessings shower upon you and bestow upon each of you a bright, healthy and peaceful new year.

Rev. Marcy Sheremetta

May 2021 be kind to you and yours.

Always.

Election 2020 Reflection

Spoiler Alert: I voted for Joe Biden.

November 7, 2020 was an amazingly-wonderful-super-awesome-good-day for America. Yes, that’s how it’s written. I only added the hyphens to make it more readable.

I write this more for myself as a way to preserve my thoughts. It’s a mixture of facts and feelings. I want to remember what I’m feeling and thinking. My opinions are pretty clear. Stop reading now if you are disappointed in the election results. I hope you will read on because a Biden presidency can have positive effects for the cancer community.

Joe Biden will be the 46th president of the United States. Kamala Harris will be the first woman vice president. The race was finally called on Saturday around 10:30 AM (CT) from the national election that was held on Tuesday, November 3rd

The election this year was extremely difficult. No one was sure how long it would take to get results and what would happen after those results became final. Millions voted by mail due to concerns about going to polling places during the COVID-19 pandemic. There were some concerns of violence. There were many attempts of voter suppression in cities that were likely to have a high turnout for Biden. The number of polling sites was reduced out of concerns of virus transmission but interestingly largely in areas that were likely to vote for Biden. I believe that is the real reason. U.S. mailboxes were removed. Votes did not get delivered in time because of illegal activities (in my opinion) by the Trump appointed U.S. postmaster general, Louis DeJoy.

Trump won’t concede. He’s filed lawsuits claiming election fraud. He claims the election was stolen from him. His claims are baseless. There is absolutely no evidence of fraud. Many GOP dominated legislatures wouldn’t let the massive number of mail-in ballots be counted early. Wisconsin was one such state that couldn’t get a head start on counting the number of returned mail-in ballots. There always have been allowances for mail-in ballots to be counted after the election. A high percentage of these ballots were rightly predicted to have been cast for Biden. Trump didn’t want them counted because he said they were late and illegal. Au contraire – they’re legal and cast very early. It is insane that people protested in some states to stop counting votes. Voting is literally what defines a democracy. Pennsylvania pushed Biden over the 270 electoral college threshold he needed to be declared the winner.

Thankfully, Wisconsin voted blue. Ten electoral votes for the Biden column. Truthfully, I struggle to understand how anyone voted for Trump. He wasn’t honest. He ruled like a dictator-child. Presidents aren’t meant to rule like a king or dictator. I heard Senator Mitt Romney (R-Utah) comment on a news program that the election was a referendum of a person and not of conservative principles. His point was conservative principles still exist and that is why republican candidates still did well in states that rejected Trump. He makes a good point. I don’t agree with the examples he cited on the environment, energy, and taxes, but I do see his point. I know I have a friend or two, plus some family members, who likely didn’t vote for Biden. Romney’s comment helps me understand them a bit better, not a lot, but a bit. I find it too hard to overlook Trump’s lack of human decency.

Biden won. Trump lost. The election is over. Finally. We must move forward.

Votes are still being tallied because every vote must be counted. Here are the election results from The Associated Press as of the night of November 8th:

Joe Biden with 75,253,350 votes.  50.7%

Donald Trump with 70,831,493 votes. 47.7%

The people have spoken.

Biden has received the most votes of any presidential candidate in U.S. history. He tried to be president twice before but didn’t receive the democratic nomination. He got it the third time and has won. Maybe he lost those other two times because this is when we need him the most in our country. Our country needs unity and many believe he can bring people together.

Kamala Harris will be the first woman vice president. It’s about time. Little girls are allowed to dream big. Big girls, too. What an incredibly strong role model. She is Black, Indian-American, and has made so many historic firsts in her life. It’s been a hundred years since women won the right to vote. Kamala Harris chose to wear white to recognize that work of suffragists in her acceptance speech. “While I may be the first woman in this office, I won’t be the last,” is one of many shining lines from her speech. America is changing for the better.

What does this mean for cancer? Both Biden and Harris are passionate about cancer research. The soon to be Madam VP’s mother, Dr. Shyamala Gopalan Harris, was a cancer research scientist. President elect Biden’s eldest son Beau died from an aggressive brain tumor known as a glioblastoma multiforme. Cancer doesn’t care who you are or your political affiliation. But it does matter who holds office and it could be transformative to cancer research. A Biden administration is good for the cancer community. Biden and Harris have the potential to prioritize funding and support for cancer research. Both of them will be hearing from me.

The country is still deeply divided. There is racism. There is hate. There are science deniers. There is a lot of entitlement and privilege. People won’t wear masks. Many say they aren’t willing to get a vaccine when available. A lot needs to change.

And yet, I’m hopeful.

I went to one of my favorite places, the UW Arboretum to celebrate the election outcome. There was a middle-aged white man standing on the corner of Mineral Point Road and Segoe Road holding a cardboard Dump Trump sign above his head. I wondered why he’d chosen that message and not one that was more pro Biden or democracy oriented, but I honked gleefully and gave a thumbs up as I waited at the traffic light. The car next to me then honked, too. I’m sure I could find revelers around the Capitol Square if I went there, but I wasn’t looking for large parties or protests.

Across the nation, people celebrated. It resembled a nation-wide block party. Thousands gathered in front of the White House singing and partying. They wore masks, as they should, but it was still a serious risk. They weighed the risk and decided the reward outweighed the risk. They belted out YMCA (so funny this has emerged as a victory song) and Sweet Caroline. Celebrations erupted from coast to coast. Many flooded the streets spontaneously. I saw one video where a crowd danced at a gas station. People looked so unapologetically joyful. New Yorkers banged pots and pans from their windows. Supporters danced and sang in the streets of Philly. I held my own dance party in my family room. I haven’t seen my country this happy for over four years. I am overjoyed.

The world rejoiced. Cathedral bells rang in Paris, France. There were fireworks in London. It says a lot if other countries are excited. I was happy when Angela Merkel and Jacinda Ardern were elected to lead Germany and New Zealand, but there were no fireworks or street parties in the U.S. that I know of when that happened. No mass euphoria.

Inauguration Day is January 20, 2021. When Trump was inaugurated, I dubbed January 20, 2017, as a Day of Integrity. It was the one-year anniversary that marked the passing of a friend’s father. I suggested not watching TV coverage that day and watching videos of both of our fathers instead to celebrate our dads. They were good men – men who were loved, men with integrity, and men who are still missed. Our Day of Integrity was a good day. Loving memories replaced some of the sadness. Integrity in the nation will be restored on January 20, 2021. I will watch with pride.

Heavy Breathing

I have a friend who works as an administrator in health care. She often shares with me aspects of wellness activities that are part of her work. Recently, she told me there had been many long days at the hospital due to all the planning that goes into protecting staff and patients from COVID-19 while ensuring the hospital and other facilities still operate effectively and safely. It’s a very demanding job, yet she describes it as also being a highly supportive work environment. She has shared with me creative challenge questions they are given each week. One week each person needed to share a sound that made them feel productive. She said it made people more mindful of the sounds in their environment all week long. A little extra mindfulness can make an enormous difference these days. My friend chose the sound of cutting fabric. She is a talented quilter, so this sound made sense even though it wasn’t related to work.

She also shared she liked the sound of a three-hole punch. A three-hole punch fits into her world of many papers at work. As a teacher, I liked the three-hole punch, too, although I think this friend likes it more. I still have a three-hole punch but rarely use it. It has a definite sound of accomplishment. It’s the precursor to placing final papers in a binder. I love binders but they are pretty quiet office supplies.

What would I have chosen as a teacher? Would I have chosen the morning bell announcing it was time to officially start my day with my second graders? Maybe the ending bell was a better indicator of a day filled with work, learning, and productivity. A pencil sharpener evokes mixed feelings. Often it was used to give the illusion of working hard when hardly working was the more likely scenario. Other times it represented the definite hum of worker bees in the hive of learning.

None of those sounds fit my present life. I still like the sound of an electric pencil sharpener. A newly sharpened pencil makes a soft scratching sound as it scrawls across a sheet of paper. It’s hardly perceptible but it’s there. I don’t do tons of writing by hand. I gravitate towards pens over pencils when I do. Even now as I type away, the keyboard clicks in a rhythm of spurts. Words appear, but I’ve never equated the sound of typing as being especially productive. I’ve never paid any attention to it. I’m being mindful of it now but think of it more as a means to an end. It’s the finished piece that makes me feel productive and that has no sound. When I’m done, I’m just done.

My home is pretty quiet. TV or music provides background noise. I’m not producing either of those. I don’t cook a lot, so the cooking sounds of mixers, knives slicing on cutting boards, and timers going off aren’t sounds that work for me either. I like the sound when it’s quiet. Silence has never bothered me. Seldom is there ever truly no sound. The clock that hung in my grandma’s kitchen ticks away in mine. I can hear that from the rooms off my kitchen. I find it reassuring. Comforting. Constant. Centering.

I enjoy being in nature where I can listen to birds sing and leaves rustle on trees. I can hear the wild turkeys forage as they move slowly in a cluster. A strong wind is exhilarating if it isn’t pushing against me. I’m not making any of these sounds. I just take them in and let them fill my soul.

How am I productive? What do I really DO anymore?

I’m a professional patient. Most things during treatment are done to me, not by me. Sounds are not any result of great productivity on my end. I sit the majority of my time at office visits and treatments, only walking to get from one area to the next. The infusion machine beeps when there is a problem or my infusion is done. I hear the whoosh of my cold cap filling with the magic cold that I wear to save as much hair as possible. Occasionally, I’ll hear doors of other treatment bays slide open and parts of conversations between nurses and patients. So much for privacy. About the only productive contribution I make is pressing the call button. I do that often to alert the nurses when I need to start the next phase of the scalp cooling process or there is an air bubble in the infusion tubing and the machine is beeping rhythmically because it isn’t happy. I don’t do very much. I show up and I endure, no small feats, but I don’t turn cartwheels while I’m there.

Professional patients still want to feel productive. We are quiet; we are vocal. We float in and out of appointments and visits; we dig in our heels and don’t make things easy for anyone while trying to get what we need that makes us feel human and a wee bit healthier. We say we are fine; we tell it like it is. We are grateful; we resent some things. We are individuals; we are part of a cancer community. We keep using our voices to push for action and not awareness; we know the number of women and men who die every day from metastatic breast cancer hasn’t budged one bit. Are we productive? Yes and no. There are no distinctive sounds that make any of these behaviors and feelings stand out.

I exercise. That’s an area of my life where I take ownership. Even this has changed no thanks to the issues I’ve encountered on this treatment with hand and feet issues. I’m aware I keep coming back to this in quite a few of my posts or comments, but I tell you, it has hit me hard. I hurt to some degree pretty much all the time with this treatment. Gripping tools makes my hands hurt. Gardening and yard work took a hit this summer. My first attempt at raking this season didn’t bode well for all I have to rake. My opposable thumbs have been highly oppositional. My poor elbows are skinned due to using them to push up off the floor when doing yoga or getting out of bed because pushing off my hands is painful. I work hard at walking, but I never know where my edge is and when I will have done too much. I only had blisters on my feet once, until last week when one the size of dime developed on the top of my big toe. My point is that a lot of the physical work that made me feel like I was being productive has been sidelined. I can’t run right now. I can’t lift my kettlebells. Walking is at a slower pace.

But . . . I have found a way to exercise differently. My coach has been phenomenal. I ordered a weighted vest and can load it up to sixty pounds if I want. Twenty pounds is a good amount for me. I can wear it walking around the house. An extra twenty pounds makes a noticeable difference. I will load more when twenty pounds doesn’t make me work hard. I climb stairs wearing it. I do squats, forearm planks, modified pushups, and some yoga poses. Over and over again. My core gets a workout. That vest pushes me. It makes me sweat. I feel alive and decisive.

The vest gives me control and agency. Putting it on and doing hard work is my choice. I know there will be moments I wish I wasn’t wearing it because it makes the work I’m doing lots tougher. It makes me feel like I’ve accomplished something and like I’m winning for a few minutes of my day. The vest makes me feel strong and proud of myself. I know I’ve had a good workout after I’ve used it. Feeling strong and proud are powerful feelings. I can do hard things. Hard things that make me feel good. Hard things that I choose. I am productive.

How do I know?

It’s the heavy breathing.

Heavy breathing is my sound that makes me feel productive.

Merchandising Cancer

I am pretty sure I’ll offend people today.

I offend myself. I have reservations if I should even post what I’ve written. It looks like I have despite my doubts.

I know my thoughts surrounding merchandising cancer have an angry tone. I am not sorry for it and won’t apologize. I get to feel angry that people make money off a disease that kills. I get to feel angry that people buy t-shirts and mugs rather than donate directly to research. I get to feel angry that I put myself through agony in an effort to change even one person’s attitude about breast cancer merchandise.

Offensive Section

Are you someone who feels okay with pink ribbon shirts? Somehow these are big business whereas merchandising other demographics would be abominations.

Think about these scenarios:

Alcoholism and drug addiction merchandise. Those who conquer these demons work hard every single day. It just isn’t necessary to wear their sobriety on their sleeve. Chips are awarded as small recognition for major achievements. The first chip is earned after 24 hours. It’s not a market for profit. April is designated as Alcohol Awareness Month but it doesn’t garner the same kind of attention that cold beer at sporting events attracts.

Where are the COVID shirts? It’s current and global. Or would those be in poor taste?

Yes, they would be in horrible taste. Sadly, there probably will be some that eventually surface. Maybe they already have. The 200,000+ who have died won’t be given a second thought. The global death toll has topped over a million.

Where are the shirts featuring funeral homes, coffins, or grave markers? We all will use these in some form or another at some point. Why not celebrate it with cute shirts? People wouldn’t have to worry about what to wear to funerals. This captive audience isn’t being targeted.

Because it’s wrong, offensive, sick, and unthinkable.

Pinkwashing

Pinkwashing is when a company uses breast cancer to promote itself and its products or services. Often there is no support of breast cancer charities at all.

None of what I suggested should be merchandised. Somehow though, it’s allowable to profit off cancer.

You may see pink. I see death. I see the coffins and the funerals. I see visits to cemeteries. I don’t understand why someone needs a shirt to celebrate every day in October. I have read such stories from people who own a pink shirt to wear each day in the name of awareness.

A t-shirt typically is priced around $25. It totals $775 if you have a different one for each day in October. Ask for a donation to cancer research and it sounds like a bizarre idea to some because nothing tangible is gained from donating.

Facebook Comments

I see too many ads on Facebook that have around 2 thousand comments. Merchandising cancer is a business, pure and simple.

 If two thousand people put $25 each toward metastatic breast cancer research, it would total $50,000.

The following are actual comments from Facebook with names removed. They all push my buttons in some form. My takeaway is there are an awful lot of people who easily fall prey to a pretty pink product and pink messaging and all the pinkwashing that Pinktober brings.

Sending prayers to all my tired 6 years ago but I won …hang in there lady’s you can beat it to

(We all make an occasional typo, but lack of punctuation and correct grammar makes this hard to decipher. This is how the comment was written word for word.)

Be strong you! You can order this shirt here:

Omg love this….. it’s so true!!9 years and counting.

Love this shirt! I need this!!!!!

I need this for October which is breast cancer awareness month

My daughter is fighting right now she has her last chemo treatment on the 17th this is what she would say. I just pray we can say it’s gone and she can ring that bell… god bless you all ❤️❤️

OMG I NEED THIS SHIRT!!!!

So cute!

Beautiful

Fight!Fight!Fight!!!!

ABSOLUTELY love this, I’m a 35plus year Survivor, I’m getting this 

I am in that fight myself, but I have God on my side.

Quite a few just type words like blessings, prayers, hugs, or use several prayer and heart emojis.

There are a couple emojis I have in mind that I am tempted to use. Yes, those.

I’ve ranted on a few of these sites out of frustration and anger. I don’t think it does much. Direct replies to others’ comments are my new strategy. By focusing on individuals, I hope to make a difference one by one. Information presented without my angry tone may be more effective. I don’t mind if anyone reading wants to join me and use my comments.

Here are a few of my attempts:

I can understand if wearing a shirt helps you feel strong right now. None of the proceeds from these shirts go to breast cancer research. I feel strong when I advocate and donate for more research.

Have you considered donating to breast cancer research? Thank you if you already have.

Nothing from sales goes towards research. Nothing! If two thousand people put $25 each toward metastatic breast cancer research that would total $50,000. Is wearing a “cute” shirt that “you have to have” really the way you want to go? There’s nothing cute about cancer. Having this shirt does nothing for research. Many thanks if you’ve donated to research. Always check where your contributions go and how they are used.

A more recent trend has been for people to comment on their breast cancer status and their diagnosis. There is no mention of their interest or thoughts on the advertised shirt. The comment is entirely focused on their personal experience. These folks are looking for a support group. I fail to see the connection to an ad campaign where their experience has not been solicited. These comments usually get a comment from the company as a reply with a link to order the shirt. That is really inappropriate. It’s especially low when someone has commented someone died from cancer and it’s clear they are in pain.

Businesses profit off cancer. They don’t care.

A charity or fundraiser makes money to benefit cancer care or research. They do care.

Is there a place for pink?

Are all shirts and other pink merchandise inherently bad? No. I will admit there are a few I like that convey hope. I still won’t order one based on principle and my goal to support research. I understand there are people who buy them in the name of advocacy and believe they are promoting awareness by wearing them. Maybe they have. I have yet to read a valuable comment that connects wearing the shirt to advocacy plans.

I am not against awareness. Walks and runs are important. They give hope and a sense of agency. They raise money. Fundraiser dinners and events do the same thing. Awareness must be tied to action that directly supports the cause and purpose at hand.

I am also not against pink. There are several women I know who have used it for the right reasons and recognize the metastatic community is part of their work. I am grateful for them.

If t-shirts were the answer, I would have been handed one upon diagnosis and sent on my merry way. Pinkwashing makes me blue. Mostly red with anger. Merchandise isn’t lifesaving. Merchandise lines the pockets of the business executives. Merchandise follows demand. I dream of the day when there is no demand because there are cures for all cancers.

Research can save lives.

Not pink.

More Thoughts on Identity

There are plenty of labels and titles used to assign and confuse our sense of identity. Male, female, husband, wife, widow, single, married, father, mother, childless, son, daughter, brother, sister, only child, and friend. Adjectives also serve this purpose. Beautiful, plain, ugly, happy, sad, funny, depressed, selfish, and giving. Jobs and careers do the same. Perceptions of illness and wellness are also part of the picture. I live with words like patient, survivor, thriver, lifer, metavivor, warrior, and numerous others.

Interests and beliefs both differentiate the narrow scope of labels and titles. Here true identity may lie if you are lucky enough to truly “Know Thyself.” Learning and teaching are two of my core beliefs and huge interest areas. I love reading, writing, and thinking. My interests branch out to other areas. I feel good when I exercise. Listening to Bon Jovi makes me feel just as good as John Denver folk songs. I am interested in nature photography and hiking outdoors. I love time with my friends and family. A good chocolate dessert or caramel is savored.

Identity must be a combination of all these things combined, each like a piece in a jigsaw puzzle. A puzzle really takes on many aspects of the self. Neither is complete without all the pieces. Woe to the puzzle doer to near the end of a puzzle and realize a piece is missing. You know what that piece is and how it will complete the picture, but it still isn’t the same. It’s almost complete, or as complete as it can be, but it just isn’t the same as irrefutably complete, done, and finished. It is very troubling when a person’s identity is missing a piece or two from the puzzle. It may seem obvious what piece is needed to go into the empty space, but everyone still wants to find it to finish the puzzle and make it whole before moving on to the next puzzle.

Maybe we even have a tough time seeing our true selves. It all gets very muddled. Someone else cannot tell you who you are. Identity, strength, and happiness are all inside jobs. It’s very challenging because so many outside factors influence who we are. Those labels, socioeconomic status, who we know, where we live, and even ancestry all are puzzle pieces.

It’s with friends that none of these other definers really matter. People do not say so and so is my friend because they were really good at self-care, took remarkable pictures, or could fix a flat tire. My friends are my friends because of a shared past and the similar interests and values we still share today and hopefully will share well into our futures. We laugh, we help one another, and we are just there to support one another. These are the qualities that transcend all the names, titles, adjectives, actions, and changes over time. Your true inner qualities always remain.

I can’t fix a flat. I hope that admission hasn’t cost me any friendships.

Back to the question, Who AM I? The AM changes over time. Just as the land changes over time, so do we. The Grand Canyon in its infancy was not a canyon at all but instead the great Colorado River flowing southward through Arizona. It is really an awesome feat in physiology how humans change from infants, to children, then young adults, and then through so many different stages of adulthood. And that’s only on the outside.

Thoughts, words, actions, core beliefs, and values all converge together in the I AM. I AM giving. I AM a reader, writer, and thinker. I AM a storyteller. I AM someone who enjoys the outdoors. I AM someone who enjoys the indoors, too. I AM someone who likes to laugh.

I AM loved.

I AM me.

I wrote an I AM poem back in 2012 and posted it back in May, Ideas definitely revolve around identity. You can read it here.

Living as someone with metastatic breast cancer is only one way I continue to define myself, but I don’t want that to be the first thing that people notice about me. An illness shouldn’t define anyone. Others can’t define you in terms of an illness. Unfortunately, illness seems to be the domino poised to cause others to fall.

Figuring out who I am as I navigate identity amidst medical treatments and side effects seems like a never-ending onion where a new layer is continually being peeled back and makes me cry. What doesn’t change is that I am always whole. What if instead of an onion being peeled, I was a tree that kept adding ring after ring with each passing year that told my story? I see a strong mighty oak firmly rooted in the earth that is solid and has witnessed much. Older but wiser. Unflappable. Still there. Bigger. Changes are inevitable, but I choose to see myself as whole and complete with whatever changes that life brings my identity.

There is a Quaker wisdom to “Let your life speak.” It means to let your highest truths and values guide your choices. Who I am lies in my truths and choices that begin as thoughts and materialize as actions. Love, joy, kindness, and making a difference is who I am, and who I will always be. My life will continue to speak.

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?