Cancer and Unsuitable Clothing

Winter brings many changes to how lives in winter climates are lived. Some hibernate like bears. Others embrace the outdoors, don’t mind the cold temperatures, and admire winter landscapes. Wherever you land on the spectrum of winter enjoyment, suitable winter attire is a necessity for enjoying and surviving winter if you spend any time outdoors. Alfred Wainwright, a British guidebook author, wrote the following in one of his books:

“There’s no such thing as bad weather, only unsuitable clothing.”

Alfred Wainwright, Coast to Coast

I purchased a new winter coat this year for winter. My new coat is supposed to keep me warm even if temperatures drop to 30 degrees below zero. I promise you I won’t be outdoors in such weather. I also have new snow pants that I can wear under my new coat. I have a new hat. My mittens and scarf are new from last year. All ventures in these so far have proven I stay toasty warm and dry.

My clothing is more than suitable.

I am ready for outdoor winter activity. I am ready to socialize while socially distancing. I want to see my friends. I don’t want to turn into a human icicle while seeing them. Just in case I feel my clothing is unsuitable, I’ll have a thermos of hot tea with me. Moving will be incorporated when possible. Come snow, cold, and biting wind, the pandemic will not diminish friendships any more than it has already. If nothing else, I’ll be out of the house trying to appreciate what a Wisconsin winter has to offer. I’m one of those people who thinks winter is beautiful (to a point).

If only I could be equally outfitted and prepared for cancer crap. I’m not talking about special bras, head gear, clothes for scans or accessing ports, or even the cute pink t-shirts some people just have to have. A lot comes into play to be even minimally outfitted for cancer. I am good at anticipating my needs. When I head to the cancer center, I do not travel light. I pack food and plenty to drink. I dress for comfort and easy access to my port. I bring enough to keep me busy while I’m there. I have my binder ready with my questions for my oncologist. My cold capping equipment is another necessity now always with me. I’m sure I look like I’m staying a few days rather than several hours.

Living with metastatic breast cancer means I must be mentally ready for what cancer throws at me. Metaphorically speaking, I need suitable clothing. I wear layers. There is a security wall I can activate in a flash when needed to protect myself from unwanted comments that pry, pressure, or are pitiful. Often, I surround myself with this wall at office visits for other reasons. There is a sterile and impersonal energy there I’m convinced must be pumped through the ventilation system. I do better emotionally if I can be somewhat detached and not feel so I can ask questions objectively and keep my focus. It’s hard because I make decisions and feel things out with my heart more than my head. Cancer has transformed that ability and I’ve gotten better than I intended at being numb to my feelings.

Another layer is planning for side effects and how they’ll impact my schedule. Grocery shopping, meal planning, meal prep, laundry, paying bills, trips to the pharmacy along with other errands, and all the things grown-ups do get planned around my treatment schedule and side effects. The occasional outdoor social activity is planned when I am most likely able to safely do it.

There are a few positive layers to my cancer clothing. I have my healthcare team. I have strong treatments. I have true friends who are a wall all on their own. Together, they form a mighty fortress to protect and support me as real friends do. I have traits that I like to think of as strengths: hope (belief, faith, spirituality), determination (stubbornness), and my sense of humor (perhaps this really is insanity). I consider myself a lifelong learner and love what I can learn about life and try to help others when I can.

Even with all these layers that may serve me well, I still feel ill-equipped to go up against the cancer beast. My wardrobe is most unsuitable where cancer is concerned. Nothing does what I need it to do – wipe out the cancer. Medical advances are not advanced enough. Everything is designed to lessen the effects, provide relief, keep me strong, while hopefully working against cancer growth. The side effects are still unsuitable. Additional drugs are doled out to address side effects and they have side effects of their own. It can be tough to track what ick is from what drug. The medical approaches are unsuitable. The overall survival rates from research are unsuitable. Research more often than not isn’t applicable to me. Unsuitable. The lack of more effective treatments is unsuitable. There are more and more complications that insert themselves into my life. I regularly have to tweak a hack that worked well for me to something lesser. A lot of the time I feel like cancer has stripped me bare. I’m left exposed, shivering, and defenseless. All unsuitable.

I need a treatment that surrounds me like a down coat and can keep me warm up to 30 below.

We all do.

Hope and Nature

2021 got off to a rocky start for the United States when a riotous mob stormed the Capitol in an attempted coup. This happened on the cusp of all 2020 gave the world. A friend of mine shared how she went for a walk to walk off feelings of despair she felt in the wake of recent events. Beauty surrounded her. She explained that she came across smiling strangers who offered greetings, children laughing and sledding, and sunshine breaking through the clouds. Walking often clears the mind and changes perspective. My friend returned home feeling better, reminded that lessons from nature make us stronger.

Wow. I decided I needed to head out to the nearby arboretum myself the next day and look for signs of hope in nature. I was not disappointed. Signs of hope were plentiful in my surroundings. Several inches of snow covered the ground. Tracks from small animals, skis, and walkers left trails to be followed. I see hope in snow because it assures me winter is how winter should be. It is a time for parts of nature to rest. Thousands of trees surrounded me. Some trees had rough bark with lots of texture, others were smooth. I always feel protected among so many trees. I know they are still alive in winter and just conserving energy. Their continued cycle of life is hopeful. I heard geese as they flew overhead. Signs of life were all around, and where there is life there is hope.

I even saw signs of spring. Literal signs near one of the entrances. Spring is perhaps the season filled with the most hope through births, blossoms, and the return of animals that have migrated. It will be months before these return but spring will come.

The people I encountered were friendly. It’s always what I find there. Waves, smiles, lots of good mornings. When I see images of people in the news who are hateful, dangerous, and destructive, I’m filled with despair. Spending time outside is good for me. It’s fresh air. I’m moving. I’m away from the TV and the news. Having interactions with humans who are polite and seem positive are meaningful to me even if they are brief. Hope in humanity is restored in small doses.

Of all the things I noticed around me, a slow realization began to build.

The greatest signs of hope I found were within myself.

  • I was in charge of my day doing exactly what I wanted.
  • I had control. I felt agency. All decisions and actions were entirely mine.
  • I could feel my heart beating inside my chest. I could hear myself breathe. I was fully alive.
  • I wasn’t just walking. I was briskly walking. My stride felt like I could break into a run or I could lift off and fly. What the heck was going on with me? Times when I feel well will never be taken for granted.
  • Moments in the now are filled with hope.
  • I thought I could walk for hours. My energy was boundless that week which I welcomed like a warm fire on a cold night. I liked seeing what I could achieve on a week when I felt like me. I capped my walk at an hour because I occasionally do more than I should, and I wanted my feeling of success to stay with me. Success breeds more hope.
  • I felt strong.
  • I felt my spirit.
  • I felt my will.
  • I felt healthy.
  • I felt at home.
  • I felt gratitude.

I felt all of these on a grand scale. Each gave me hope. Treatment resumed last week for me, and I carried hope with me. Hope is a necessity living with metastatic cancer that at times wears thin. Some days I run on fumes. Regular boosts are as essential as chemotherapy. The side effects from hope are a lot better, too. Those are all listed above. Nature provides hope every time. I look to the sky, clouds, sunshine, snow, and even rain. It’s in the trees, flowers, and wildlife. I feel it in the breeze. It is there in the stillness. Look, listen, and feel for it.

Hope is within each of us. It’s our nature.

Cancer Perspectives

Years back, I had a student I will call Paul. Paul greeted me cheerfully every morning and most days made me smile easily. He was a chatterbox, an average student, and enjoyed being at school. He was there for the social aspects and needed redirection to work independently, but he’d always tell me learning was very important. He struck me as a happy child because he could find the bright side in just about anything.

At some point during that school year, Paul lost his enthusiasm. School wasn’t where he wanted to be. He was unusually quiet and wouldn’t open up. There had been a few more behavior issues surfacing. It was a puzzle until the morning I logged on to my school email and found an angry email from his mother letting me know Paul had been hit in the face during class. She included the principal in the email as well, citing concerns her son was being bullied at school both in class and on the playground.

Had Paul been hit in the face in class? Sadly, yes. I was there when it happened and already had it processed and worked through with both boys. Enter a boy I’ll call Ali. Ali had poor impulse control, and like Paul, could be easily distracted. Now, it doesn’t take long for mutual distractors to connect with one another in whatever ways they will. What was interesting in this situation was that Paul had positioned himself right behind Ali during a cooperative class activity. He was holding one of Ali’s arms behind his back and wouldn’t let go. Paul also left that part out of his story when he reported the story to his mother.

So, Ali slugged him.

Paul let go.

Every player had a different perspective of these events. Paul’s mom was seeing a pattern that worried her and she was advocating for her son. She knew if she threw the word bullied into the conversation that it would have considerable traction. It always does whether it is an accurate description of events or not. I wonder what she would have thought if I suggested Paul actually had bullied Ali because of repetitive issues between the boys. I didn’t ask. No need to stir that pot.

The principal had more of a three-tiered perspective: support for the child, positive communication with the parent, and supporting how I responded to what happened in the classroom. He knew of the other incidents that involved playground events and some reoccurring students.

Ali’s perspective was reactive. He often didn’t think before he did something. I imagine he was thinking something along the lines of, “Why is Paul grabbing me? It’s my turn in the game. Let go!” Pow. Problem solved.

Paul had a couple points of view. He knew what would get a response from home, and he genuinely was not feeling accepted by peers. He wanted friendships, but ironically had unsuccessful interactions which achieved the exact opposite of what he intended. He felt picked on. I never really learned what happened on the playground, but I’m sure it factored into his feelings. In his mind, all these things together made him feel bullied.

My teacher perspective was one where I was just baffled by Paul’s motivation to grab Ali’s arm like he did in the first place. I was equally baffled with Ali. Who just hauls off and hits someone? I guess someone who feels like they are being restrained for no reason.

Reality is often intangible. Each of us has our own reality as we perceive it, each through our own lens. The same event affects people differently.

The same is true with cancer. Cancer affects people differently. There is no right. Each person perceives cancer from their own viewpoint. Those who are back to whatever normal is after an early stage cancer diagnosis and treatment see cancer very differently from those with metastatic cancer. Some with metastatic cancer call themselves survivors, thrivers, metsers, cancer havers, lifers, or warriors. It comes down to the individual. Caregivers, family, oncologists, and nurses all offer their own unique perspectives. Media in my opinion gets it wrong more than they get it right because their goals for a story don’t often match mine. Breast Cancer Awareness Month and the repetitive emphasis on pink and awareness rather than research and action is a perfect example.

How others with Stage IV cancer view those of us who have survived longer than the 2-3 year median is another area of differing perspectives. I read something recently where someone felt that those who shared longer survival times were being cruel to those who weren’t likely to experience more years. I’ll hit nine years in a few months. I see those who share longer survival as symbols of hope. I look to those who have 11, 15, and over 20 years living with metastatic disease.

It’s all a crapshoot. It all sucks. I recognize it may be difficult to read news when you may not be doing well. Sometimes it’s rough to read news of stable scans or NEAD when mine are not. It can be hard for me to share news when things are going well because I know others don’t have those results. I usually don’t share much news publicly. And yet, I don’t see sharing such news as being cruel. Good news is always good news.

One viewpoint I have a tough time accepting is the natural or alternative approaches to treating cancer. Modern medicine is always going to be my frontline plan. I do believe in complementary therapies to support my health. There was someone early on in my diagnosis who reminded me more than once that I chose the chemo route to treat cancer. Did she think I didn’t know? What exactly was her point? I was well aware that I chose science over crazy. I may eat my kale and turmeric, but I’m of the opinion I need treatments with more medical substance. I’m here because of them.

There are those with cancer who may want to talk about how things are going and medical results in great detail. Some people are an open book. A patient (total stranger) in the treatment waiting area once told me all about his medical treatment plan and then proceeded to stand up and almost take off his t-shirt to show me his burns from radiation. I hadn’t asked, couldn’t stop him, and got myself an eyeful of awful. He was all about sharing. To each their own.

Over the years of living with metastatic breast cancer, it has been especially challenging not to let negative comments from family members and well-meaning friends fester away and gnaw at me. Some people at times are just awkward with me. How could the same person ask repeatedly if I missed teaching? Maybe it was dementia or just awkwardness on their part. My “prognosis” used to be brought up often by another. A friend or two has become distant. Look, I’m living and out in the world accomplishing things I wouldn’t be if I were working full time. It strikes me as really uncaring that others try to stick me in a place they think I am or remind me of what a textbook has to say about me. Occasionally, someone “reminds” me that I have cancer. I’m not going to forget. It’s with me every day.

The Blind Men and the Elephant is an Indian fable about six blind men who encountered an elephant but did not know what an elephant was. They saw it by feeling it with their hands. Each felt a different part of it. One thought the elephant was like a pillar by feeling its strong leg. Another disagreed and thought the elephant was like a rope because he had touched its tail. The third, who had touched the elephant’s trunk, insisted an elephant was more like a thick branch of a tree. The man who had felt the elephant’s ear thought an elephant was like a big hand fan. The fifth blind man thought an elephant was like a big wall from touching its belly, and the last, who had touched the elephant’s tusk, said an elephant was like a solid pipe. All of the men insisted he was right and they loudly argued.

Along came the king who didn’t like all the noise. He told the blind men they all had different experiences but were all right. After the men understood the true nature of an elephant, the arguments ended, and the elephant transported the men away.

We are so like the blind men when we let only our experiences form our perspectives. And of course, how could it be any other way? What is important to keep in mind with the parable and with life is that people approach situations from different perspectives based on different versions of reality. Cancer is a pretty big whopping elephant and gets perceived in countless ways.

I may not agree with how everyone chooses to share or specific ideas about cancer. I know not everyone agrees with all of my thoughts. That’s okay. I believe we still can support one another and can learn from each other. There is room for all of us at the table to share our experiences.

And I won’t slug anyone if we disagree.

Allergic Reactions to Chemotherapy

I’m allergic to tree nuts and people nuts. It’s much easier to avoid the tree nuts. I wonder (often) if I’m the nutty one. Perhaps these are stories for another time. Today, I share what happened at a recent treatment visit.

Chemotherapies, hormonal therapies, and targeted therapies can all cause allergic reactions. This is true for just about any medication. Mild reactions involve rashes, hives, and itching. More serious reactions include nausea and vomiting, difficulty breathing and swallowing, and swelling of the face, eyes, or tongue. Anaphylaxis is the most severe allergic reaction.

I switched to a new chemotherapy last month – Taxol / paclitaxel. I received it over eight years ago as part of my original regiment. I have mixed feelings about returning to Taxol. On the plus side, it worked incredibly well for me. On the con side, I experienced a lot of flushing and I was hot and cold at the same time. I had insomnia. Lots of nausea. There were muscle and joint aches. A heavy schedule of steroids accompanied this regiment and those caused increased appetite and weight gain. I looked puffy and put on a good twenty pounds. Fatigue, fatigue, fatigue. Of course, there was hair loss. I even wound up in the hospital due to a nasty pneumonia I managed to develop with shingles at the same time. I’m giving it another go. See what I mean about possibly being the nutty one?

I took my large doses of steroids at 10 PM the night before and 4 AM the morning of chemo. Surprisingly, I didn’t have sleep trouble as I thought I would. I figured I may as well stay up when I took the early morning dose since food was recommended and I doubted I’d fall back to sleep.

I spent my extra time with a good weight and cardio workout, followed by walking. I had over two miles in before I left the house. I wanted to make the most of feeling good before feeling crappy and more crappy took over. I felt like a boss going into my day.

All went well at the hospital. My labs were excellent, the best they’ve been in some time. My office visit was positive and upbeat. A medical assistant not assigned to me came in and spent a few minutes catching up. I hadn’t seen her in a while and she just wanted to say hello. Small kindnesses like this are so appreciated.

Treatment even started fine. I liked Brittany the nurse who was assigned to me. She attended a hot yoga event I planned as a fundraiser much earlier in the year. It created an instant bond for me. Those bonds are important because I know I am thought of as a person and not just a patient. I was given a bed which is standard for new drugs in case there is a reaction. Not only did I have a bed, but I got a big room with plenty of space for all my stuff that comes in tow with me. I even had a private bathroom where we could put on my cold cap. I felt I had a suite for my stint at the chemo spa.

I use a cold cap and hope to save my hair with it. I pre-cooled longer than necessary at my request because I wanted my scalp to have a little extra boost. A couple of other nurse friends popped in to visit. Denise gave me a beautiful painted rock with a chickadee on it because I had a rough go the last time I was there when I learned I had to switch drugs. She requested it from a friend who paints rocks not knowing chickadees are my one of my favorite birds. This dreaded day was going far better than expected.

Brittany returned to start the Taxol. The protocol followed is for the nurse to stay for the first 15 minutes of the total 60 of the infusion. An allergic reaction would most likely happen in that time if one were to happen. I had no symptoms. I didn’t feel hot or itchy. My breathing was fine. Swallowing was fine. All my vitals were excellent with my oxygen in the 98-99% range. I attribute it to the merits of a solid workout. Nothing was abnormal.

As required, I was given lots of Benadryl through IV. It’s also a precaution for a potential reaction. It made me drowsy. The only comfortable position for me was to lie back with pillows propped around my head. My head was titled back far but it was comfortable, and I felt I might doze for a good portion of this process. So much the better. The bowling ball of a cold cap I wear on my head diminishes most feelings of real comfort. I finished my hour infusion and moved on to the post-cooling phase. I got unhooked from the IV pole and moved to the nearby chair so I could catch up on some laptop work. It would pass the 60 minutes I needed to cool with the cold cap.

Toward the end of this time I happened to touch my throat and felt a bulge. I read later in my treatment notes it was the size of a golf ball. There was also swelling that seemed to extend to other parts of my neck. Uh oh. Immediately, I pressed the call button. Brittany agreed it was not good. I answered lots of questions. I had no other symptoms. My breathing was good and my vitals were all still excellent. I could drink water smoothly without swallowing difficulties. My voice was a little scratchy. That was possibly bad, but I make an effort not to hydrate tons while there because I don’t like being unhooked from the scalp cooling machine for even a few minutes to use the bathroom if I can help it. There was a plausible explanation for my voice not sounding like usual.

A wrench was now thrown into an otherwise successful day. An allergic reaction was the likely cause. It didn’t seem too bad. I cried briefly because some stupid thing always seems to happen to me. I was no longer a boss. I was hooked back up to my IV and shot up with more steroids. No Benadryl as I drove myself. I was observed for an hour and there really was no change in the size of the bulge in my neck or swelling.

Over the course of that observational hour, I thought about what I had at my disposal to speed things along. I had ice in my lunch bag. It was too hard and unmalleable to my throat. My frozen drink was still cold and the perfect size. I could roll it from the top of my throat down and it felt good. I thought I was getting results after 5 minutes. I knew I was after 10 minutes and the swelling had gone down.

Brittany returned with the decision that I could go home but I needed to call 911 if anything changed. I told her I had iced it and we agreed the swelling had gone down a lot. I was glad to hear I could go home because I had also decided I was leaving. I arrived by 8 AM and didn’t leave until around 5 PM. I was exhausted, hungry, and confused.

I wasn’t really sure what had happened. It just didn’t fit the mold for a classic allergic reaction. Everything was back to normal by 7 PM that night. I’m weird in terms of unusual or delayed responses, but I still don’t think this was one. There were no internal symptoms (other than the swelling) that showed up like difficulty breathing or swallowing. My vitals remained normal. I figured these would fluctuate if I were allergic to something. The timing was off. Ice wasn’t going to resolve an allergic reaction. Drugs would. Plus, pretty much the exact same thing happened the following week during the pre-cooling phase before Taxol was even given. My money is on the cap and the chinstrap tightness. After a discussion with the capping company, they agreed improper positioning of the chinstrap was the likely cause. My bad. It would be lovely to have something like that checked by qualified staff. The mask covers the strap, but still.

The small possibility exists of something going on drug wise that no one can figure out. What happened wasn’t desirable at all, but it supports two common phrases in the metastatic breast cancer community: There’s always something. And the something can always be worse.

I seem to have my share of somethings.

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.