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.