What Coronavirus Means to Me

I never thought I’d see a pandemic happen. It’s 2020. We live in a world where medicine, technology, and people working together are supposed to prevent something like this from happening, certainly from spreading.

But here we are.

I also thought I wouldn’t write about this topic. But it is everywhere I go – or don’t go to reflect life more realistically.

News changes rapidly. I wrote this post on a Friday to post on Sunday at its usual time. I hate to wonder what might change in the interim.

I have a much higher chance of dying from coronavirus than a healthy individual should I get it – a 79% chance to be exact – because of cancer. I would be one of the ones not given a ventilator if I needed one and there is a shortage because of others who would have a stronger chance of surviving. A ventilator shortage is something I don’t want to think about for anyone.

I am one of many. I know people who have respiratory issues, diabetes, heart conditions, and others with cancer. I have friends who are worried about their children with health conditions. I know this affects more than just me.

It affects ALL of us.

I should be freaking out. I am fearful, yes, but fear is present in my life anyway. I minimize that fear where and when I can. I’ve been doing it for a long time. I am surprised that I am as calm as I am.

My treatment took place as planned last week. The hospital had an excellent plan in place that I could see at every level of my visit ranging from the parking structure to my treatment. I hope my health continues to be as high of a priority in the future as it is now for the doctors and staff who care for me. I do have worries how my life living with cancer might be affected. I am concerned there may be delays or unplanned breaks in my treatment and changes in my protocol out of what is deemed by an institution as best for me. That may be an entire post on its own.

Living with metastatic breast cancer has made me better prepared for this than I thought it would. I am high risk.  As the virus continues to unfold, this is what I’ve discovered about myself.

I am good at social distancing.

Isolating myself isn’t really new for me. I have stayed home from activities before because I might catch a cold or the flu. I have canceled plans with friends to be safe. I haven’t hugged people, high fived, or shaken hands. Visitors have used separate hand towels. I moved off the sidewalk to the street when I encountered others on a walk the other day. I offered a friendly wave but no explanation to these strangers. It’s better for me to be safe than sorry and I will keep my distance. Literally.

I am prepared if I get sick suddenly.

Or as prepared as I can be. I may be more prepared than the average person, but I am not sure that’s true in these crazy times. I already had several days of non-perishable and easy to prepare foods stocked if I were to catch something from someone or if I were not feeling well due to cancer. I shopped early on and stocked up on cold medicines, cough drops, lots of choices for multi-symptom relief for diarrhea and stomach discomfort. I always have more toilet paper than one person probably needs. I know my current side effects. I know my needs.

The news changed about a month ago to when – not if – the U.S. would be hit with coronavirus. I made more plans for what I needed and have plenty of food to last me and other supplies. It took several trips to find hand sanitizer, but I eventually found some. I completed my first online grocery list and will do curbside pickup later this week. I still think there are advantages to choosing my own groceries, but I’ll see how online ordering goes and will decide later what to do another time. I likely will make an early morning trip here and there for milk and eggs, but I have powdered milk and a frozen quiche if the situation worsens and I can’t. Some panic oozed into a couple purchases. I guess I am okay with a degree of panic in unknown situations that change day to day. I have a solid plan for the time being and I am a good planner. On to point number three . . .

I plan my life around side effects.

Based on past treatments, I knew when I could schedule something fun or do necessary errands on days when I wasn’t hit with side effects. Fatigue and nausea could be predicted. Low white blood counts could be predicted. Insomnia and days of hot flashes and the chills all could be predicted.

My plans now revolve around oncology appointments and treatments. Keeping those are a top priority. I will move mountains to stick to my treatment schedule. Every other event or activity I’ve planned has been canceled. Not my treatments.

I am good at occupying time on my own. My home activities include:

  • Reading
  • Writing
  • Making cards
  • Exercising
  • Meditating
  • Writing thank you notes
  • Talking on the phone
  • Playing piano
  • Finger painting (have the paints but haven’t done yet)
  • Touch up painting on walls and trim (always low on my list)
  • Decluttering and Organizing (sadly also rather low on my list)
  • Watching TV and movies
  • Puzzles
  • Walking outside by myself if weather permits
  • Hanging out in my sauna
  • Practicing Reiki
  • I even have a microphone and a very small sound system where I can change the voice effect (harmonizing, choir, echo, robot) when I feel like singing at home where no one will hear me.

I have control over what I do and where I go.

I have had lots of practice at this. I have gone days, even a week here and there without seeing people or having face to face conversations due to my health or the health of others. I have made decisions to cancel plans that I haven’t wanted to cancel but it’s been in my best interest to do so. All my practice has made me good at it. I know how to stay as safe as possible during a crisis like this. It sucks but is the right move for me.

It’s the right move for all of us.

Temporary changes will have long term benefits.

It only takes one to infect many.

Stay home.

Don’t travel.

Go for a drive or walk outdoors on your own.

Don’t be a carrier or feel you’ll be okay if you get it because you’re healthy. The elderly and those with preexisting health conditions are not expendable. We matter. We are loved.

You matter.

For the love of God . . . cough and sneeze into your elbow.

Wash your hands or hand sanitize after blowing your nose.

We need to work together by staying apart.

What does coronavirus mean to you?

8 Years

Spring is a hard time of year for me due to a few tough dates that come around once a year. One of those dates has arrived. It takes me back to a late afternoon. I had arrived home from work and the phone rang.

It was the “you have cancer” call.

March 14, 2012.

My diagnosis day.

I mark the day and call it my survivorversary.

It acknowledges and commemorates. I won’t forget it. By no means do I celebrate, but I will do a short happy dance as time marches onward. Days become weeks, weeks become months, and months become years. I am still here. I will not celebrate cancer. I will absolutely celebrate me.

Every day I can.

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A Day Off

Waking up to sunshine

feels good.

My soul is warm

from sleep.

I am rested.

I was away from cancer

if only in my dreams.

 

What would a day,

an honest to goodness

waking day,

be like away from cancer?

 

No lab numbers to think about.

No office visits

or treatments.

No waiting rooms

with the

disquieting

discomfort

that there are so many others

quietly waiting

and doing what I do

regularly.

 

No appointments

to schedule.

No scans or tests.

 

No pharmacies.

No new scripts.

No refills.

No hassles.

 

I wouldn’t have to take any

medications or

supplements

that may or

may not

help.

 

No side effects

to manage

for just one day.

 

No MyChart.

No waiting for answers

to questions that only

raise more

questions

or cause

more

angst.

 

I would be absent from

Twitter,

Facebook,

Instagram,

and WordPress.

 

The TV would be off all day.

I wouldn’t be subjected to

commercials for

Ibrance,

Piqray,

Verzenio,

Kisqali,

or the latest

metastatic breast cancer

drug.

 

I wouldn’t have to see a character

portrayed with cancer

with misinformation or

one who doesn’t match

my reality.

 

There is

always

something

to remind me.

 

A day off

would mean

ZERO

reminders

that I

live

with

metastatic breast cancer.

 

My mind

would need to be

wiped clean of my

knowledge and

memories

of having it

and of its existence.

 

Because I remember.

 

Because I am never away.

 

My only

break is

in my dreams

that aren’t real

and that are quickly

forgotten.

 

I don’t get a day off.

 

I get day

after day

after day . . .

 

And I’m still

here.

 

And I’m still

grateful.

Strong and Stronger with Kettlebells

A kettlebell is a cast iron ball with a handle at the top to hold onto while lifting. They come in a variety of sizes, fit all skill levels, and there are many different ways to use them.

Doorstops.

Paperweights.

Perhaps an impromptu anchor.

Or as a solid part of strength training.

I didn’t like kettlebell work when I first started using them. Allow me to state the obvious that they were heavy and I wasn’t very strong. Slowly that changed and over time I increased my lifting amount bit by bit. I could do more reps and I was taught different ways to use them in my workouts. I began to LOVE the kettlebell part of my training sessions. The main reason was I could see improvements and knew I was gaining physical strength as I moved from one kettlebell weight up to the next. It felt good in a world where I was accustomed to loss.

I ordered them as I needed them to use in my home. I asked for them for my birthday. I watched the UPS man lug small boxes to my doorstep and tell me whatever was in there was heavy. A few of the boxes came battered but the contents were in awesome condition. Kettlebells don’t dent.

Another reason why I love working with kettlebells is what they do for my emotional strength. I got stronger on the inside knowing what I was capable of on the outside. I felt more confident and determined. I stood taller. I felt better.

I cannot find who said the following but I have come back to it a lot lately –

“Just because you carry something well, doesn’t mean it isn’t heavy.”

I carry a lot. I carry metastatic breast cancer with me and it is always there whether it is in the foreground or background of an activity or conversation. It’s there.

It’s heavy.

We all have heavy things to carry that are not visible to others. Health. Emotions. Finances. Work. Relationships. Trauma. We carry a lot. Many of us carry these burdens well. We are used to the extra weight. We have figured out how to live with whatever we carry. Saying we are strong is an understatement. Just because we can carry it doesn’t mean that “it” isn’t heavy.

It sounds ironic but lifting kettlebells lightens the load.

Kettlebells help me work on some of my emotional weight along with something physical in this sense. I can release some of it for a few minutes. Somehow I feel more solid. I feel strong and in control of my decisions and outcomes for a bit. I feel in control.

Control is a pretty foreign feeling and I’ll take it when I can get it.

Working with kettlebells offers an amazing opportunity to combine cardio and strength training. Different muscle groups can be targeted. Deadlifts are a little different from squats. Arm presses work different muscles than curls. A traditional kettlebell swing is a quite fun and empowering feeling. I never get bored.

I get tired and I get sore, but I’m never bored.

Pavel Tsatsouline is the founder of the kettlebell school StrongFirst (written as one word). One quote of his that I love is, “We do not tolerate weakness at StrongFirst. You do not have a weak arm and a strong arm – but a strong and a stronger one.”

We are strong and stronger. Weak moments are not failures but learning opportunities. We are learning and learning some more. We are living in a growth mindset instead of a fixed mindset. I want to remember I am strong even on my suckiest days. I am stronger on better days but always coming from a place of strength. Hope equals strength.

The past week presented some glorious strong moments and a couple where strength was almost nonexistent. I’m still not sure there was any strength present at all. I had undeniably hard moments. Hard stuff doesn’t mean I’m weak. It means I have hard stuff and hard stuff sucks. Living in a world of strong and stronger is work.

“Keep calm and carry on.” The famous Winston Churchill quote from 1939 was meant to reassure the British public when major cities were threatened with air attacks during WWII. Air attacks strike me as an awful lot to carry, not to say anything about keeping calm.

To carry on means to stay the course. We all have heavy things to carry. But we carry on.

I can carry what is mine and I can stay the course. I am strong and stronger.

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Waiting Rooms

Time passes excruciatingly slowly in waiting rooms. It’s exhausting. The bulk of my oncology visits are spent waiting. At my last visit, I looked around at all the others waiting. Observing who was around me made the minutes pass more quickly.

There was one patient near me wearing a bandana on her head with a mask on. She was on her phone planning a vacation for October because she “should be able to go then” as she told her husband.

Her husband and another woman were working on a jigsaw puzzle. I gathered they already knew one another by the warm hug they shared as a greeting.

Next to me, there was an older man wearing a mask who was there with his wife. Both were reading books.

Another older couple waited. The woman was engrossed in a book and the man had his eyes glued to his phone.

There was another older man there by himself in a rocking chair on his phone. He was called back soon after I began taking stock of the waiting room.

A woman who walked with a cane perhaps in her sixties and her daughter were the next to head back to the treatment area.

There was a man across the room who came in single digit degree weather wearing shorts and donning a camouflaged hat. I think he was the patient.

A woman fidgeted her leg while she flipped through the pages of a magazine. Another older man near her read a book. My assessment was they were waiting for someone but I didn’t have anything solid to form my opinion.

A woman maybe in her late thirties wore a black headwrap with a top knot bun tied in front. Her husband was with her. He looked tired. She looked healthier than he did and my guess was she was the patient.

A senior lady slowly moved about on her own, wisps of gray hair sticking out of a coral crocheted cancer cap. She settled into one of the rockers.

Me.

Alone.

Not everyone came with a caregiver or companion. That observation surprised me because it seems I read or hear so much about caregiver support. I prefer being on my own because my days when I have a full schedule of appointments at the hospital get long and there is no reason for someone else to be with me. I am grateful to be able to manage well by myself when I make trips there on average three weeks out of every month, more during testing windows.

The TV blared an action movie that no one watched. It’s usually news or something claiming to be news on other days.

Sixteen waited by my count. Most were senior citizens. I was not the youngest one. Five were probably in their 30s or 40s. There were ten women and six men. My guess six of the ten women present were likely patients, compared to four of the six men. Three were black. The rest were white. No other groups were visibly represented by my observations.

All of us were waiting.

Waiting for treatment.

We’re waiting for many “nexts” in our lives.

Waiting for good news.

Waiting for the treatment part of the day to be done so we can go home.

Waiting for chemo fog to lift.

Waiting to not feel depressed.

Waiting to not have anxiety.

Waiting for favorite foods to taste good again.

Waiting for our immune systems to be strong once more.

Waiting for tests to be scheduled and completed.

Waiting for test results.

Waiting for more targeted treatments.

Waiting for research that addresses individual mutations for cancer subtypes.

Waiting for the other shoe to drop.

Waiting for phone calls.

Some may be waiting for a final treatment. Not me. Not having an end in sight is the preferred option for my life.

We all are waiting.

Some of us are waiting for the same things and some for different things.

Waiting rooms are spaces where you stay until things change. I have waited and waited and waited in personal waiting rooms of my own making. I have spent time waiting for others to do their part or pull their crap together. Waiting for others is inevitable when you need them in order to move forward with your part of the whole. It’s effective if you’re working as part of a strong team. Not so much if you’re wishing or hoping that someone maybe does something if they remember or have time. Waiting is hard for me because I am a doer.

I don’t like waiting and sometimes that’s the only thing left to do.

I am tired of waiting.

My wait was surprisingly short for this specific treatment visit. The waiting room looked different when it was time for me to leave about an hour later. More seats were filled. It looked like men outnumbered women.

The one factor that remained the same . . .

Everyone was still waiting.

We wait.

The Golden Plunger

The Golden Plunger was a coveted trophy at the school where I taught. Keep in mind as you read today that the world of teaching involves meetings on topics that you never dreamed would be needed. There are conversations only others involved in education can understand. Lots of talk and resulting rules about snow pants, snowballs, and what constitutes as throwing snow. Days spent testing students and then meeting to discuss what those assessments meant and how they would inform our teaching. Most often it struck me pretty quickly what was needed, but it was discussed at length so we could come to an agreement in 4 hours with what could have been decided in an hour. Common planning time each week was often dictated by administrators and true team time was delegated to lunch which always got used for work because teaching overflowed to those places and times that were supposed to be duty free.

There were meetings about bathrooms.

Messy bathrooms were discussed a lot. Kids weren’t showing responsibility and respect in how they acted in the bathrooms and in keeping them tidy. I kid you not. Water was splashed everywhere. Paper towels were on the floor rather than in the trash. They could be left in disgusting shape for numerous reasons. Some kids disappeared there many times during a day because despite the appearance and smell it apparently was preferred from being in the classroom.

What was to be done? How could we affect positive change and gets kids to care? I worked in a district that had adopted PBIS ideology. PBIS is short for Positive Behavioral Interventions and Supports. Trainings. Surveys. Data. Rubrics. More meetings. My school focused on behaviors of being respectful, responsible, safe, and being learners in a variety of settings around the school.

Including the bathroom. Yes, we discussed how being a learner applied to school bathrooms.

In case you’re wondering, the answer is to take care of business quickly so you can return to your classroom and your work. It could be work you’re trying to avoid by going to the bathroom multiple times during reading or math, but never mind discussing underlying causes. That could be saved for another riveting meeting.

The Golden Plunger was born from these important meetings and conversations. Someone somewhere conceived this tool for all of us to have at our disposal.

There were three main bathrooms in my school: The Bell Bathroom, The Eagle Bathroom, and The Elm Bathroom. Yes, they had names. This was perfectly normal in school culture. Classrooms were assigned a designated bathroom to use. Each week there was a competition on which bathroom could be kept the cleanest. The custodians kept notes and made the final decisions. The winning bathroom would receive The Golden Plunger Award.

There was an actual golden plunger. It was hung each week in a place of honor in the winning bathroom. Great suspense was built up during the morning announcements before the winning bathroom was shared.

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Classrooms would erupt in cheers.

Spoiler alert: It was rigged.

The custodians made sure all the bathrooms received this prestigious award. Some got it more than others. I’ll go on record asserting some bathrooms got used more than others. For example, my class was assigned to use the bathroom that was also used by the entire school because it was closest to music, art, gym, and the lunchroom. It was going to be messier by default every week. Hence the rigging.

I let this go long ago, but the truth always comes out.

Some kids cared. Some thought it was lame. Yet, even the ones who thought it was lame would pump their fists like they had won the plunger championships when they won. The Golden Plunger was one of many ways that built school community.

What does this have to do with cancer?

Motivation.

I would love an award for my efforts as someone living with metastatic breast cancer.

Silent yahoos for decent lab numbers. Frequent flyer miles for racked up driving miles to be used in the germateria. I am not opposed to a sticker chart. Impromptu dance parties in exam rooms are a must whenever good news is given. It would be appreciated to be acknowledged for the small strides I make. Heck, plan an assembly.

I’ll do these things for myself privately (except the assembly). I am a firm believer in rewarding myself and celebrating good work through walks, books, shopping, and treats.

Believe it or not, I am intrinsically motivated. I also want that sense of community at oncology visits that accompanied the golden plunger in the school. It’s harder to remain motivated without a sense of community. I can do it but I want more. It still frustrates me that this is missing when I go to visits and treatments.

Motivation is a key component to success. Feeling like I make progress in my efforts makes me feel successful. Even small wins are still wins. I work to raise or lower lab numbers. I strive to remain active and exercise. I do not lose hope because hope gives me energy time and time again to push through when the going gets tough.

I am motivated to continue treatments and endure whatever side effects I need to because I believe that breast cancer research will make future treatments more targeted and therefore more successful. I am motivated to keep advocating for myself because I am well aware that I have the most interest in my outcome. I am motivated to keep speaking up and repeating myself because more people need to hear my words. Stage IV needs more. Research equals hope. I am motivated to dig my heels in and not budge when others tell me I’m not realistic or I’m being too ambitious. I am doing what I need to do.

I am motivated to keep pushing for positive change.

Motion comes down to a push or pull. A push or pull is how force was defined in science on an elementary grade level. A plunger clears blocked pipes using the forces of push or pull. I am golden and powerful, just like that golden plunger, motivated to keep pushing that my life flows in the right direction. By no means do I wish to be equated with a plunger, but I am a force, trying to clear my way and make a better path for others.

I have become pushy.

I will find a way to keep pushing. Always.

Triggers and Treasures

People with metastatic breast cancer often write about things that trigger strong emotions.

Common triggers are:

  • Oncology visits – Stressful
  • Scans – Stressful
  • Results – Stressful
  • Insensitive and/or negative comments from others – Did they get it all? At least you don’t have to work. My grandma had cancer . . . she died. Maybe you should give “x” a try. You don’t look sick. The list goes on and on.
  • Dates that serve as reminders – Memories can haunt.
  • Deaths of others with metastatic cancer – Painful emotionally and physically.
  • Aches, pains, feeling under the weather and worrying about any new symptom – What is normal when abnormal is the norm?
  • Invitations and attending social events – I have a hard time feeling comfortable, looking decent, and I worry about food agreeing with me, dodging questions, and talking about what I’m up to when so much of my time focuses on my health.
  • Making long term plans – I don’t want to cancel something fun I’ve planned to do even if it’s next week. It’s challenging to commit to taking a vacation longer than a week because it’s pretty rare where I don’t have something medical on the calendar. Committing to a vacation a few months away involves tacking on the extra travel insurance because I feel better knowing a refund is possible if my health causes a problem.
  • General toxicity from others – I’ve had enough.

Here are two new ones for me:

  • Politics – I can spiral when health care gets used as a pawn or when inalienable rights are taken away. It sickens me when elected officials are self-serving and ignore the U.S. Constitution rather than serve the people.
  • Susan G. Komen – I’m afraid I have developed trolling behaviors on Facebook when I see posts about how this “nonprofit” gives the gift of time even though they refuse to help people with stage IV cancer and turn them away when they ask for help. Stage IV is the only stage that kills and NOT helping us is giving us the gift of LESS TIME. I can accept that they may help others (provide mammograms and some financial assistance for those who need it) but then a slogan needs to match this intention where false claims aren’t made. How would you even go about proving a donation gives the gift of time? You can’t connect them together. See what I mean about being triggered? I can’t hold back once I see one of their stupid posts. I’m working on it because the troll version of me is mean.

Yet there are treasures in my life that I focus on when I find myself needing to steer away from triggers. Life doesn’t always afford the possibility of such control. A partial list of my treasures includes:

  • Good books – My favorite from last year was Where the Crawdads Sing (Delia Owens). Reading helps me escape from reality while still focusing on universal needs for love, truth, justice, and what is right. I thoroughly love words.
  • Writing – I find the process cathartic. It helps me organize my ideas and feelings in a concrete way. There are times I am not even sure what my point is until I’ve finished writing and the words stare back at me. I learn from it. I loved teaching children to write. I don’t mind revising. Revising is part of the crafting. Again, I love words.
  • Friends who are friends no matter what – My life is better because of my friends.
  • Exercise – Stress relief. Builds strength. Feels good.
  • Being in nature – Relaxes me.
  • Birds – A sweet little chickadee just came to the feeder outside my window and made me smile. Birds are entertaining creatures and unique from one another.
  • Calming music – Soothes me.
  • Caramel, cookies, brownies, and ice cream – Not at the same time but that sounds delicious.
  • Reiki – Universal life force energy helps me feel better connected and supported in the world.
  • Favorite photos – Happy memories warm my soul.

A lot of advice centers around not reacting to triggers immediately and trying to find a healthy outlet to replace the trigger. Spending time on treasures brings me more joy. Joy comes from a place of love and that replaces triggers that originate in fear. There is a reason treasures are buried and protected – they are valuable and we want to keep them safe. They are priceless. Treasured people, places, and things are kept close to our hearts. We don’t want to lose them.

We all have treasures in our lives. May the year ahead hold more treasures than triggers in your life.