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.

Quiet Joy, Self-Care, and Cancer

Trumpets proclaim joy in jubilant fanfares. Confetti cannons explode. Applause, laughter, and cheerful shouts all accompany joy.

Joy is important. I want to feel as much of it as I can.

I love carols like Joy to the World and Go Tell It On the Mountain especially when I’m singing them along with a large crowd in church. I won’t be doing that this year. I’ll have home sing-a-longs on my own. I’ll even make up words when I can’t remember all the lyrics.

For all the joyful noise that rightfully has its place in our lives, I make the time to revel in the joyfulness of quiet. I also find joy in the peacefulness of the season. The quieter songs fill me just as full as the louder ones. Probably fuller. I even remember the words most of the time.

One of my favorite hymns of Advent is My Soul in Stillness Waits. It repeats these words several times:

For you Oh Lord, my soul in stillness waits,
truly my hope is in you.

It’s a song of waiting, of hope, and of light. The melody is smooth and repetitive, like the back and forth of a soothing lullaby. Sometimes I envision my church decorated with green boughs and lit trees on the altar. That’s usually where I am when it’s sung. Sometimes I think of a starry night sky with that one distinctive star aligning perfectly in the Bethlehem sky with a manger below. I’m beyond excited to view Jupiter and Saturn align this year on December 21st as a “Christmas Star” and will gaze eagerly towards the southwestern skies.

Jesus was born away in a manger, far from crowds, in the quiet. Sure, the cattle were lowing, but the baby didn’t fuss. The stars looked down on baby Jesus while he slept. You might even call it a very silent, holy night. Away in a Manger and Silent Night are two other favorite carols of mine. My mom loved Silent Night, too.

My dad loved The Little Drummer Boy, a song of a poor boy whose gift was his song. Drums would normally be loud and thunderous. Here they are sweet and soft. Pa-rum pum pum pum. The song is so simple and peaceful.

Joy doesn’t need to be loud. It can be, but joyful stillness can move our souls powerfully without creating a big stir. Jesus wasn’t running around with jingle bells.

The Christmas season is much too terribly rushed by my standards. There is such a buildup that starts as soon as Halloween ends. Christmas comes, and then – poof – it’s gone. Spending part my day doing quiet things like reading, listening to music, taking a walk outside, wearing comfy pajamas, sitting by a warm fire, and eating a few favorite foods whenever I feel like it all sound lovely to me. These things bring me joy. I get joy from the time spent with others but don’t get much out of working all day, listening to music blare carols nonstop, running myself ragged cooking, or trying to spend every single moment with others. I usually find I am too fatigued by the time I get home to enjoy much on my own in the evening. Christmas is over, I’m exhausted, and I didn’t honor some of my needs. I find many components of the holidays to be stressful when my self-care is neglected. When I have time on my own, I’m very content to be also be with others.

Here is my list of easy joyfully quiet activities:

  1. Watching snow fall or admiring an untouched snowfall
  2. Gazing at the Christmas tree until you fall asleep
  3. Playing carols on the piano or listening to music
  4. Snuggling in front of a fireplace
  5. Taking a walk in the woods and just listening to sounds
  6. Spending part of your evening without electricity and instead using only candles
  7. Bird watching
  8. Building a snowman / Making snow angels
  9. Watching a favorite Christmas program or movie
  10. A quiet morning or evening walk

An evening with candles will soften everything else around you that night. Perspectives will shift. A quiet morning walk to perhaps take in the sunrise makes you feel like it’s for you alone. Walking in the evening to look at Christmas lights is a quiet way to take in neighborhood displays. I like combining a few of these at a time. Gazing at my tree while listening to music in front of a fire is a favorite thing to do.

Joy is healing. Doing things I don’t find joyful is not. Cancer has plenty of unjoyful moments. It is imperative that I put some boundaries in place to protect joy and healing during the holiday season. It’s more than okay to turn down invitations or change plans. It’s perfectly fine to have some time on my own. It’s definitely okay to do whatever I need and not justify your reasons.

This year it’s easier compared to others because I’ll be celebrating a pandemic Christmas and it will be all on my own. I’ll get to experience opening gifts under my tree this year on Christmas morning for the first time ever. To make the most of these circumstances, I’ve wrapped several items I’ve gotten for myself as Christmas gifts. I am more excited about this than I expected. I’d love to be with my family, but I know I won’t have this chance again. I’m going to do my best to enjoy a lovely day.

None of this is meant to be negative. Rather, it is motivated by compassion and the need for self-care. Showing yourself love and support is extremely positive. Self-care is vital to our lives whether we live with cancer, something else, or are in perfect health. It’s been hard for me to learn this lesson as a people pleaser. I have learned a lot about how to put myself first. I’ll keep learning.

If others are unable to see my joy, whose joy is that really about?

I know there will be plenty of exuberant joys with Christmas this year. There always are. That hasn’t changed as I keep living with metastatic cancer. There will be exuberant joys even this year when so many plans have changed and many, including myself, will be on our own. Enjoy all the quiet joys, stillness, and peacefulness coming your way that Christmas brings this year. Maybe it’s the hush of a blanket of snow when you look out a window. Maybe it’s staring at the Christmas tree and being lost in memories. Maybe it’s playing a few carols on the piano and singing along. Whatever they may be, enjoy them.

Always.

Holly Hobby and Tennis Balls

‘Tis the season for gift giving.

I grew up in a family that was a bit over the top with the number of presents that my parents gave to their children. Discovering the floor covered with gifts under the tree on Christmas morning was such joy. There were toys as a child, then lots of clothes as a teen, and then more grownup gifts in adulthood.

My Holly Hobby doll was a favorite Christmas present. Santa brought her all the way from the North Pole one year. She played outside with me and still has a smudge on her right hand from some adventure. She even came on a couple of family vacations. We survived traveling cross country together long before the days of seat belt legislation. I remember riding in the front seat sitting on my mom’s lap while holding Holly Hobby on mine. That car had no central air conditioning. Sometimes my mom held both her daughters and our dolls at the same time despite a perfectly good back seat. Holly Hobby is still with me and lives on one of the beds in a guest room with the Bucky Badger I got another year from Santa. I know it would be nice if someone played with them again, but I decided long ago they both were staying with me. I’ve always been too sentimental.

Jewelry made excellent gifts as I grew older. Pearls and gemstones are treasured gifts that are more meaningful to me today than when I got them. I think I need to wear these more often to dress up my yoga pants and more relaxed attire.

Gifts of lesser monetary value carry meaning, too. My dad was especially vocal about how he liked tennis balls that I received one year as one of my birthday gifts. It has become a running joke with a friend of mine years later. I liked the tennis balls, too.

Christmas will be different this year because of the pandemic. Gifts will likely be exchanged and opened by myself at home with some type of video connection. A cold garage idea was floated but I am not excited about that option. Home by the hearth works for me.

Holidays can be hard.

It was simpler when Holly Hobby or tennis balls was all it took to make me smile. I could give my dad an Old Spice soap on a rope and my mom a knick-knack decoration and all was well in our worlds.

There truly is very little I need in terms of material goods. I am fortunate to be able to buy what I need. It ensures I get what I want without waiting. Amazon Prime hasn’t helped. Giving myself gifts and treats are an important part of my self-care. Can I share a secret? Having just shared I don’t feel I’m too materialistic, I’m going to wrap my gifts to myself this year and put them under my tree.

To me, from me.

An unprecedented year calls for some new moves of my own.

Experiences and time together are more valuable gifts to me. I still want to get to Sedona. I’d like to eat inside restaurants. I would love to have friends gather in my home. I would just like to see friends in person. Anywhere. The biggest factor is what my life looks like after there’s a vaccine for COVID-19. I’d rather hang out with my friends than have some big extravaganza event that is stressful. Some may enjoy extravaganzas. Not my cup of tea. I’d enjoy that cup of tea in a relaxed setting much more.

I have the gifts of family, friends, and a beautiful home where I feel safe. I receive top notch health care. I am kind and have a good sense of humor. These are all priceless gifts. Call it the holiday spirit, but my life is good. Cancer is not good, but my life is good.

What makes good gifts for someone with cancer?

A permanent cancer zapper would be perfect.

Good gifts should match a person’s interests. It doesn’t hurt to ask if something is needed or what might be appreciated. Please skip the pink crap, cancer ornaments, or things that take up a lot of space. Food may be welcome, but some of us have dietary restrictions we are trying to follow or may not tolerate spicy foods. I remember a couple home cooked meals I received as part of meal trains when going through initial chemo in 2012 that were exactly what I needed. Gift cards for takeout or delivery are thoughtful. Books are great if you know what kind of writing or favorite authors someone likes to read.

Experiences are the type of gifts that mean a lot to me. Tickets to a show. Listening to a concert. An afternoon history lecture. A gift certificate for a massage. Hiking someplace I’ve never been. All of these aren’t possible during a pandemic. Hiking is possible but I am hesitant to venture somewhere less traveled on my own where I could get lost. I’ve gotten lost twice before on hikes. I’m not looking for a stressful adventure. Some familiarity is welcome during crazy times.

One former colleague I have known for years does something incredible for gifts. She and the adults in her family don’t exchange presents but pitch in together and make a substantial donation to a charity they agree upon. Last year it was my fundraiser for metastatic breast cancer research. It blew me away but is a gift idea that has stuck with me.

If this idea appeals to you, here are a few possibilities that do research or support cancer research:

More For Stage IV

One Woman Many Lakes

Mary Gooze is a friend of mine. She is the one amazing woman behind One Woman Many Lakes and creator of the More For Stage IV Fund. Both links above will lead you to the same site to donate. Incidentally, Mary is planning to raise $70,000 for the Stage IV fund for her 70th birthday in June of 2021. She has a separate fundraising page set up to track those donations you can find here.

As always, thoroughly research how money you donate is used and how much is allocated for research. For full disclosure, I am partial to research happening at Carbone Cancer Center if you couldn’t tell from the multiple times I’ve shared their link.  I know there are many reputable research facilities making worthy strides in research. Here are a few others that I have heard good things about outside of Wisconsin. I always look for pull down tabs for metastatic breast cancer research or a way to direct a donation for research to a specific cancer type such as childhood, lung, colon, prostate, etc.

Metavivor

Breast Cancer Research Foundation

Mayo Clinic

Memorial Sloan Kettering Cancer Center

A donation to research is a great gift any time of year.

Holly Hobby, tennis balls, and even jewelry aren’t bad either.

Happy gift giving to you as you go about making the world a bit brighter this season.

Toxic Positivity

I am a positive person. I am not doom and gloom. Hope is a theme that is front and center in most of my thinking and plans. I believe a positive perspective increases my chances of success in whatever I endeavor. It isn’t that I have to exercise; it’s that I get to exercise. The snow is still the same amount whether I like it or not. I choose to enjoy it and cross country ski when I have the chance. I am not trapped in my home all these months during COVID-19. I am safe.

Living with metastatic cancer makes seeing the bright side harder. I usually am still able to see it. I am grateful I don’t have to work while trying to manage my health. I have a home where I’m more than comfortable. I feel so fortunate to be near top-tier health care. Yet, life isn’t all bright and shiny and lucky me. I still have cancer and cancer sucks. Sucks hard. But I’m still here and that fact is pretty sparkly in my eyes.

I experience the dark. When I’m there, I know that’s where I need to be for a period of time until I’m done with the darkness. IF it’s something I share, and that’s a big if, I need people to acknowledge how crappy the present moment is and that they also feel bad about what’s happening. I do not need to hear Pollyanna BS. Sometimes I need an objective viewpoint, but objectivity isn’t necessarily overly positive.

I have seen comments lately from a few who live at Our Lady of the Perpetually Positive on social media when someone else in the cancer community is in the dark. It isn’t helpful to respond with some never give up mantra when someone is in deep despair about the latest development with cancer when things aren’t going well. A treatment isn’t working. There aren’t options to try. Someone is experiencing physical pain. It is torture to read such news.

People need space held for them in this scary unfolding.

I recently read one such toxic positive comment as a response to another’s bad news. The advice given was to be happy and positive. It’s worth noting the responder is a long time breast cancer survivor and doesn’t have metastatic breast cancer. Does that matter? I’m not sure. There still can be pain and permanent issues as a survivor. I can’t think of a fair comparison. I have a dear friend who is a two-time survivor of breast cancer. I know I can talk to her about things and she listens and responds sensitively. She would never tell me to be happy and positive when something has me devastated.

Perhaps it’s also worth noting this kind of “be happy” response is this person’s go to reply from other comments she’s made. She means well. I have no reason to believe otherwise. Yet, it’s repetitive. It rubs me the wrong way, so much so that I’m writing about it. One of us is missing something in translation. It very possibly could be me.

And yes, I am well aware that I can’t control how another person responds to something. I am used to people not responding the way I think they should in life. I can only control my reaction. There are plenty of opportunities in my life to practice how I react. This is one such opportunity.

So, what is an appropriate way to respond to this perpetual positivity? Perhaps it is simply to mind my own business. Some people have a gift with responses that honor what was said and still offer comfort and that thread of hope. That thread of hope is important to me. A lot of the time I don’t know what I can say that would help someone else feel heard and less alone. Most of the time I think I do okay. I’m more at a loss as to how I’d appropriately respond if I were to receive some of these over the top positive comments.

What is best?

Empathy/Sensitive: Thank you for caring. This advice is truly more upsetting to me than helpful.

Blunt: You so don’t understand. I’m unable to feel the way you are about my impending doom.

Expletive: One or two choice words may communicate feelings effectively.

Short and Sweet: Thank you. It acknowledges the original comment with gratitude and no judgment.

No response: Sometimes ignoring is a fine way to let go and move on. No response is a response. I remind myself I don’t have to share my every thought and reaction, especially if it may be something I could come to regret.

I can only speak for myself, but I would want supportive comments that meet me where I am. I posted a photo of my hand at the end of summer. I set a clear boundary with what I wrote in that I didn’t want pity, advice, or to be reminded I was tough. I wrote I wanted people to know that there were many of us who go around rather quietly but still have a hard time dealing with side effects of our treatments. I wrote more was needed for Stage IV. My friends knew it was uncharacteristic for me to share a hardship. Comments let me know people understood, that I was heard, that cancer sucked, and that I was loved. I didn’t get one single suggestion to go make lemonade with my lemons. Making lemonade would have been fairly hard for me since squeezing lemons would hurt.

There are also cancer magazines that emphasize coping positively with cancer. That’s perfectly fine as there is nothing wrong with positive thinking. However, it became a little less fine one day when I read one such magazine’s submission guidelines that stated they strived “to remain upbeat and positive. Therefore, articles about death and dying are generally not accepted.” I am deliberately not mentioning the name of the publication. I haven’t read many of their articles and want to give them the benefit of my doubts. Death and dying sure isn’t upbeat but it does happen in Cancerland. I have a choice whether I read certain articles and comments or not. Perhaps they aren’t coping too well themselves by forbidding topics that may upset readers.

As I said earlier, I’m not doom and gloom, but it strikes me as highly insensitive to tell someone to be happy when they share they are almost out of options. It is as inappropriate as peals of laughter would be if receiving news like this in person. There is a time for happiness and a time for sadness. There is a time for sunshine and a time for rain. There is a time to ditch toxic positivity and that time is now.

It is okay to not feel happy all the time.

Please leave a reply and let me know your thoughts on dealing with blinding comments from the sunny side.

Cold Cancer Wind

the cold wind races

across the empty landscape

howling as it blows

I stand in a field

unable to find shelter

it pushes me back

cancer is that wind

causing damage everywhere

stinging my stunned face

I feel like the land

unprotected and ravaged

my body takes it

it runs rampantly

like an out of control storm

both inside and out

I may be alone

but I will stand against you

as long as I can

I’m not as easy

to knock down as you first thought

whipping cancer wind

I will push back hard

standing like a boulder with

granite in my veins

Wigs and Cancer

How much do I have to say about wigs? I’m not even wearing one thanks to my cold cap. Surprisingly, I still have quite a lot to say. I have four wigs. Three of them work well for me.

My experiences at the wig salon located within the Carbone Cancer Center have been wonderful. Over the last eight plus years, my stylist Stephanie has been warm, empathetic, helpful, and has made a real connection with me. She is interested in my life, not just my life with cancer.

Because of our friendship, I’ve done a couple of interviews recently to help promote the wig salon. My main goal was to emphasize the high-quality wigs and personalized service provided there. Inevitably, the reporters also wanted to talk about my story. Both interviews have happened when I’m not currently wigging which made them slightly awkward for me. I feel it pulls away from the focus of highlighting the wig program offered. It’s pretty easy for someone with hair to talk about her memories. I can’t help but think of myself as hypocritical. Admittedly, I do not understand when others walk down memory lane and sound wistful. I just don’t get it. Perhaps someone currently going through chemo induced hair loss would have told a more poignant story for my most recent interview. Anyway, I’ve tried in each of them to come back to the role wigs have had in my experience.

My last interview was done over the phone. I was asked how wearing a wig made me feel. Did it make me feel more normal? I knew what the student journalist was asking, yet normal wasn’t the right word. I know I’ve used the word normal before to describe how wearing a wig made me feel, but the thing is it’s all relative.

When I first dabbled with the choice to wear a wig or not, I did not wear one. I hated it. Wraps made me feel normal. Being bald from time to time made me feel normal. Later in life when faced with hair loss again, a wig made me feel more normal. Comparing these two situations, I figured out what I really meant by feeling normal.

Normal meant comfortable. At one point in my life I was more comfortable in wraps and scarves. Another time I was more comfortable in a wig. I was in different places with different comfort levels. Comfort in this instance means both emotional and physical comfort. A wig was a physical manifestation that brought me inner comfort. It was easy to wear.

There was safety in that comfort.

Digging deeper, I realize the word normal also correlated with a need for privacy. I wanted to go about my business without drawing attention to myself. Losing hair is such a public side effect of cancer. Wearing a good wig made me feel less on display. I was able to keep my private life more private to those who didn’t know me. I looked like everyone else and that is where the word normal fits because it is a norm for women to have hair.

There is also safety in that privacy.

Safety is a big thing for me. Cancer doesn’t make me feel safe.

Another question I was asked was whether wearing a wig made me feel more confident. I know I’ve also used this word in the past to describe wearing a wig. During the second interview, I realized confident was not the right word either. I felt the journalist wanted me to use it per the way she was asking the question. I also felt like I wasn’t giving her what she wanted, but I couldn’t agree with her if I wasn’t feeling it. In the end, the published article made only a passing reference to me with a supporting comment I provided about the wig stylist. That’s fine as the wigs and stylist really were the focus. I benefited from our conversation because I finally figured out my feelings on wigs.

Wigs absolutely can make someone feel more confident. Couldn’t they also make someone feel like a fraud? Again, it’s all relative. I struggled when someone commented how nice my short hair (wig) looked years ago in church and thought it was probably so much easier to style. Sure, it was easier, I took it off a wig stand each morning and that was pretty much it. But I said thank you and left it there. I didn’t know her well enough to confide more.

Confidence doesn’t hinge on whether someone has hair or not. I was confident enough being bald. I just didn’t want to be bald. I wanted to have options. It takes confidence to be seen without a wig and not a hair on your head. I was confident enough in wraps and scarves. It takes confidence to know you are rocking your wrap. Confidence is internal. I think it’s based on your personality and a person’s experiences.

If I had been asked about how metastatic cancer steals identity, I would have a lot to say. The same would hold true if I had been asked how metastatic cancer affects my confidence. My sense of identity and confidence have changed throughout my years living with cancer. Sometimes I’ve been a mess. Other times I feel I know a few things about myself and about life. I wobble. I reset. My thoughts can drive me crazy within the course of one day.

I have been comfortable in a wrap, being bald, and in a wig. I’m extremely comfortable with my own hair. Go figure. Normal is as normal does. Normal can be felt at each of these times. Everyone knows what normal feels like and yet it can be hard to put into words. I have felt privacy consistently only in a wig and when my hair has been long enough to be wild and crazy. Comfort and privacy go a long way in helping me feel normal.

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.

The Wishing Tree

We all love a good wish. We wish on stars and recite time honored rhymes while doing so to make it extra official. We throw pennies in fountains and down wishing wells. Every year we blow out birthday candles as we make a wish. We wish people a happy birthday and send our best wishes in cards and correspondences. We wish people good luck. Leprechauns and genies grant us three wishes. So I hear – I have yet to encounter any. The wishbone is greatly sought after a Thanksgiving Day meal. People wish on eyelashes, a full moon, acorns, falling leaves, and feathers. The wishing culture is alive and well. I’d like to think this is because we are hopeful rather than dissatisfied.

We also wish on trees.

The Riley Wishing Tree is a phenomenon that popped up along the Military Ridge State Trail. Area middle schoolers started it as an art project in the middle of summer and it’s still going strong. Hundreds have anonymously posted their wishes on an enormous cottonwood tree to be shared and read. A plastic box filled with tags and markers is kept on a round table near the tree. The tree provides hope, inspiration, and a sense of community. It is a beautiful and powerful image to behold.

I headed out to the wishing tree with my friend Kristin on an afternoon late in October. We’ve biked on this trail before and enjoy the farms, woods, wetlands, and prairies provided for scenery. Our sole destination for this visit was to take in all the wishing tree had to offer. Discovering new ways to enjoy an old activity is delightful. We drove separately, parked close by, and approached the tree on foot. Future bike rides will evoke memories of the wishing tree long after the wishes have been removed. Maybe one of us wished for more rides.

The wishing tags are remarkably waterproof. I had suspected that over time the wishes would be blurred from rain and time out in the elements. The legibility of wishes has held up over time. I find it unexplainable. I’ve always been one to think unbelievable things are possible. Just maybe this wishing tree was magical.

What types of things did people wish for? There were lots of wishes for good health. Cures for cancer, a vaccine for COVID-19, and healthy children were repeat wishes. Wishes for peace and a better world circled the tree multiple times. Many wished for people to give trees the attention that is given to screens and computers. There were wishes to carry on Ruth Bader Ginsberg’s legacy, equality, Black Lives Matter, and the outcome of the presidential election. It appeared the tree had distinct political leanings, but it’s more likely that the tree gets visited by those who want to make the world a better place. I didn’t see one single wish for more greed and fear in the world.

Kristin and I began reading some wishes aloud. It was another way to honor the wishes. One woman wished her husband would have more compassion for other people. We both wanted to know the backstory for that wish. One tag simply stated the writer would someday marry Amanda. That’s darn romantic. I hope long into the future the couple tells their grandchildren about the time Grandpa wished on a tree to marry Grandma. Wishes penned in children’s writing hoped for pets. One wished for no allergies so the writer could have a dog. Some kids wished for fun bike rides. All were moments in time captured by individuals meant to project into the future. There was something sacred about reading wish after wish. It was a moving experience that left me feeling more connected to nature and humanity.

To put hopes and dreams out in public is empowering. Wishing can help us identify what our hearts are yearning after. Wishing can help motivate us and lead us to take action. Wishing can be the first step in making it so.

Prior to arriving at the tree, I decided I would phrase my wishes as intentions. Phrasing an intention with “I AM” where I already have what I’m seeking would give that intention more energy than a wish. Already having something is more powerful than wanting, needing, hoping, dreaming, and wishing. Yet, reading all the wishes in the presence of this magnificent tree seemed to give them extra power. I wrote some thoughts expressed as intentions and some as wishes. It’s good to cover all bases.

Wishing is universal. Folktales have themes of wishing carefully. Some are cautionary tales that we need to be careful what we wish for or not to wish foolishly. A few have even been written about wishing trees. Many cultures have traditions involving wishing. Another friend shared with me that the wishing tree reminded her of traditional wishing kiosks at temples in Japan where wishes are made at the start of a new year.

I have lots of wishes. You could probably guess a few of them and be right. I will actively work to turn those I have any control over into real life realities. Wishes with actionable steps transform wishes into achieved goals. Maybe they were goals in the first place. Seeds of ideas take root somewhere just like a seed did that grew into the wishing tree.

Wishes are tender expressions of our hearts. We wish for love and kindness. We wish the best for ourselves and wish others the best. I know people who hug trees. I am one such person. To me, the wishes hug this special tree like a person could. Our invisible arms are wrapped around it and one another. We hold ourselves up as we hold up one another. And we keep wishing.

Cancer and Treatment Fatigue

I am tired.

I think we all are tired. It’s no wonder because 2020 has thrown so much at us.

Last month on the news there was a story on what health experts in my area referred to as pandemic fatigue. It refers to people being tired of following recommended safety guidelines so strictly. As a result, they’ve let their guard down in terms of masking and social distancing. There is a spike in numbers of positive cases of COVID-19 where I live. People are being stupid. The local health expert said that through contact tracing they’ve learned people have contracted the virus when they have gone places without a mask. Guards have been let down when in small groups. People have become weary after seven months. Here we are at the end of October and Wisconsin has become a hot zone with numbers in the thousands for positive cases on a daily basis.

I’m tired of masking. I’ve planned a few more outings than in spring and summer because I want to enjoy the fall season before the cold of winter arrives. I seriously considered an outdoor activity where I knew there would be over a hundred strangers who may not be following all the safety guidelines while there. Well, I wanted to go. I’d be careful. It would be okay. I’ve been okay so far. Those were major rationalizations on my end. I decided I couldn’t go. No way.

I know it isn’t a contest between cancer and COVID, but many reading this have lived for years with cancer. The fatigue from years can’t compare to fatigue from seven months. Yet, we all can empathize because 2020 has been a rough year.

The National Center of Biotechnology Information (NCBI) is located within the National institutes of Health (NIH). The NCBI defines treatment fatigue as “decreased desire and motivation to maintain vigilance in adhering to a treatment regimen among patients prescribed long-term protocols.”

Treatment fatigue from ongoing cancer treatments absolutely counts.

I copied this next quote a while ago and thought I had copied the source. Upon finding it for this post, I see I didn’t get the source included. I’m sorry. I have searched in good faith to find it. If anyone recognizes it, please let me know and I will happily edit to include proper credit. With that disclaimer, here is a definition for cancer-related fatigue from someone somewhere:

The medical term for this is “cancer-related fatigue.” It is a feeling of physical, emotional, and mental exhaustion even though you are getting enough rest and sleep. Cancer-related fatigue can affect your daily life. And, some people may experience this kind of fatigue for months or years after finishing treatment.

Months or years after finishing treatment. I will never finish so I must endure.

Different drugs have different schedules of repeating cycles. The schedule depends on what drug is being given. Treatments can happen daily, weekly, bi-weekly, every three weeks, monthly, and quarterly. Oral medication is often prescribed to be taken daily. I believe there is a solid correlation of treatment frequency to fatigue. It’s been that way for me.

Aspects of cancer that are not treatment involved also cause cancer fatigue. There are office visits with an oncologist to schedule, labs involved, and prescriptions to keep filled. Scans and tests get squeezed into non treatment weeks and these depend both on a regular schedule and how things are going. Side effects are carried both visibly and invisibly. Even all the needle pokes for all the necessary reasons gets tiring.

There’s always something.

That something becomes exhausting.

One of the biggest something is when someone in the cancer community dies.

Other big somethings are progression, generalized anxiety, and getting through hard days.

It is just too much.

Breast Cancer Awareness Month has broken me a couple of times this year. I just can’t. I’ve been both reassured that there are always strong forces to keep walking the walk when I can’t and people who say they’ve got me when I need support. These friends recharge me.

Constant advocating wears on me like a frayed pink ribbon. What I do is small compared to the efforts of some of the women I know. I don’t understand how they do it because it appears they never rest. I know I don’t even see all they do. They amaze me and they have made big impacts. I have made a difference but it’s on a smaller scale. The advocacy hat serves a powerful purpose. I can’t wear it all the time.

My body needs time to rest and heal from cycle to cycle of each treatment. Sometimes it doesn’t feel like I am getting much of a break. Especially when fatigue is a major side effect itself. Rather than dissipating, it intensifies. The resting and healing in between cycles is hard on me because I mark time trying to ensure my issues with hand-foot syndrome don’t flare and trying to protect myself from COVID-19. I want to make the most of my time between treatments and I don’t feel I do.

Cancer and treatment fatigue goes beyond fatigue from a treatment regimen. There is emotional fatigue.

I am tired.

It does get harder the longer I do it. Appointments don’t stop. I’m never given much of a break. The grind is ongoing daily. I can never get away from it.

Cancer doesn’t take a day off.

It hasn’t stopped during the pandemic.

And yet, I’ve heard explanations regarding slowdowns said to my face “because of the pandemic” that fall flat on my ears. What I hear is that I’m not important and don’t matter after all. My house continues to burn but the firefighters are fighting a bigger fire.

Managing all my stressful emotions contributes to fatigue. My anxiety over the last eight plus years has increased. High anxiety over a long period of time stresses the body. A person cannot be on high stress mode all the time where they are constantly fending something off. Remember there is always something. I work hard to lower it during scary times so I can find some stretches of calm.

Scheduling my many appointments is another source of emotional fatigue. The schedulers overall do a good job, but they often don’t have all the facts or the facts they have are incorrect. Yet, they are the gate keepers that keep my calendar moving smoothly or create an additional and unneeded obstacle I have to clear. Billing and insurance complications raise the hurdles here, too. Over time, I have collected a couple of phone numbers of people who seem to know how to help me and make problems go away.

Not being treated like a person is one more area that weighs on me heavily.

I am tired of so much fatigue. I give myself breaks whenever I can. I laugh. I eat. I exercise. I enjoy nature. I look for beauty and comfort. And I keep on finding a way.

Always.