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.

Tracks and Visions

Winter does not have to be a cold dormant time. Winter can be a time where you see your “tracks” more easily in the sense you can see where you have been. You can also have a vision for where you’re heading.

Cross-country skiing lets me see what is both physically behind and ahead of me. It has been more challenging to do the last couple of years more due to climate change than anything health oriented. There hasn’t been enough snow. If there was enough snow, then the Wisconsin temperatures were too frigid to endure outdoor recreational winter fun. My schedule factors into plans as well. A lot has to align for me to make skiing happen. Finally, one of those aligned days happened. Even though the snow wasn’t perfect, there was what I hoped would be just enough to make it possible. Who knew when another opportunity would come along? I gathered my gear and made the short drive to the arboretum and ventured out.

My intentions on this day were to enjoy being outside getting fresh air and see how I did on skis. I went slower than a turtle and never got the gliding motion going that I love feeling on skis. Had a turtle come along, it would have easily beaten me. I managed to stay upright the entire time and that thrilled me, especially since there were wobbly moments where I momentarily lost my balance and quickly caught myself. I noticed these times were when I looked up or turned my head to the side to see something. Well, I decided not to make those movements and just stay super focused on my careful and deliberate movements forward.

It was as I reversed the route and was heading back to my starting point that I realized I had a wonderful opportunity to work on balance in action. Very slowly, I began to work on turning my head from left to right while continuing to ski forward. Then I would intentionally move my head up to look at the treetops and back down so my eyes were straight ahead. I did it over and over again and built up my confidence while I worked on making my balance better.

Being out there also made me think a lot about life balance. My body needs to move and my spirit needs to have moments in nature in order for me to feel well. I am in a very fortunate position where I don’t need to work around a work schedule. I have created new work and purpose for myself. I am now in control of where and how I want to direct that meaningful work. My life is more balanced than it used to be.

Last week I got out skiing again. I am still astonishingly slow and was passed by an older gentleman. Somehow he passed me twice. Slow and steady worked well for me. I stayed out for over an hour which was twice as long as I planned due to a decision I made to go a little farther which turned out to be much farther. I had plenty of time to think about how my tracks showed me where I’ve been and the vision I have for where I want to go.

A few of my thoughts included:

Looking back to see where I’ve been has its merits. I see my accomplishments. I can linger over happy memories. I also see if anyone is trying to pass me for a third time! However, the direction I want to go is forward so I need to focus on the path ahead of me and notice where it branches out.

I realized I looked down at my feet an awful lot to ensure I wasn’t hitting an icy patch. It seemed like I needed my gaze downward to keep my bearings. I can be just as safe looking up and looking forward, if not safer. There’s more to see. There is trust involved. I plan to continue looking forward.

One of the reasons I like cross-country skiing is because I don’t have to go down hills. I enjoyed downhill skiing in younger days. Not sure how that would work for me now. Cross-country skiing can still have hilly segments. I purposely choose flat routes. There inevitably are stretches where the trail slopes downward ever so slightly so that you take a break and coast. I usually fight these sections and actively attempt to slow myself down so that I don’t lose my balance and fall. It’s more work to fight these changes than to coast. This time I gave myself over to coasting. Less work felt good. I was safe and had nothing to fear. I plan to work smarter, not harder. Coasting may enable me to pick up speed and give me more energy.

Changing my route allows me to explore a new path. I thought I knew how I was changing my route but I miscalculated the distance. Life is exactly like this. There are miscalculations. None of us really knows how long we’ll stay on our current path before it changes. I love seeing paths turn ahead of me. It adds a little mystery to my walk, hike, or whatever. The path is revealed slowly as I move along.

I am about to mark my eighth year living with metastatic breast cancer. I can reflect on these years by comparing them to time on a ski trail. There have been paths where I’ve been wobbly. I’ve been sprawled out flat on my back hoping someone would happen by to help me up when I couldn’t get myself situated to do it on my own. I figured it out eventually. I’ve never liked relying on someone else to fix things for me that I should be able to manage on my own. Some paths have been straight, flat, and easy to navigate. It was easier to coast in younger days. There have been twists and turns I didn’t see coming. I didn’t know where I was going but it was clear I’d be on a specific route longer than I had planned and I had to keep moving forward. Sometimes I could backtrack and retrace my route. Sometimes I hoped I was closer to finishing and turning back would make things longer and harder. I can’t go back and retrace my steps with cancer. My hope is that the bit around the next turn I can’t see is a beautiful part of the trail that works well for me.

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A favorite trail in a favorite place

Ralph Waldo Emerson said it best – “What lies behind you and what lies in front of you, pales in comparison to what lies inside of you.”

My past and future, those tracks and visions, are influenced by my inner voice. What I see is dictated by how I interpret what I see and experience. My tracks, vision, and inner voice are all tied together into one intricately woven path leading forward. Onward!

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.

Cancer Research Lab Tour

I had the opportunity last week to tour the Burkard Lab for Breast Cancer Research at the UW Carbone Cancer Center. Dr. Mark Burkard is one of the oncologists there. In addition to seeing patients with breast cancer, his research interest is in targeted therapies, especially those directed at protein kinases. He also heads up the Outlier Study in addition to work in clinical trials. It’s his lab that I toured.

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Burkard Lab for Breast Cancer Research, UW Carbone

My working knowledge of cancer started when my mother was first diagnosed with primary breast cancer. I learned a lot more years later when hers became metastatic and with my initial diagnosis of metastatic breast cancer in 2012. A period of time exists between then and now where lots of information has blurred. Science never was my strongest subject. I’ll do my best to summarize what I understood from the evening’s tour. Beware of technical difficulties.

The lab tour was guided by graduate students and research team members through several stations in the lab much like learning stations would be set up in a classroom. The structure lent itself well to guiding a group of people through areas in smaller groups to provide a more personal experience. Snapshot descriptions of each station follow.

Cell Division Station

The first station was led by graduate student Roshan Xavier Norman. He explained how erroneous cell division can cause lagging chromosomes that form a micronucleus. This micronucleus doesn’t have all the material it’s supposed to have. It can lead to cancer if a cell doesn’t have the same nucleus material as the others. His work involves staining proteins in cells and looking at them through expansion microscopy. This enables him to see molecular structures at high resolution and see the difference between normal cells and abnormal cancer cells. He talked at length about chromosome segregation, spindle abnormalities, and differences in cells from mitosis that were damaged because of lagging chromosomes during DNA replication. It became very technical for me to understand, but the gist I took away was he was being successful in pinpointing these errors in cell division and there are applications to research.

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Expansion micCell Division in Various Stages

Outliers Study Station

Rob Lera, PhD, is a research associate and has been with the Burkard Research Group since 2009. He talked about the Extreme Long Term Survivor Study. The goal of this study is to identify patterns that attribute to long term survival in metastatic breast cancer patients. This study is also known as the Outliers Study because despite the odds, there are metastatic breast cancer patients living well beyond the expected two to three years median survival rate when diagnosed. There are two survivors still going strong by surviving greater than forty years, one of whom was on the tour that night! I felt like I needed to go and rub up against her for luck. Fifty of the longest survivors since their original primary diagnosis have been surviving from 22-42 years.

Data on participants in this study are gathered through extensive paper/online questionnaires, phone interviews, saliva kits, and extracting tissue samples. Most participants are HR+ Her2 – but there is representation from all MBC subtypes. Then it is all analyzed for patterns.

Preliminary results can be found HERE.

It appears the only conclusion drawn so far is there is no apparent correlation between exercise and time living with cancer or metastatic breast cancer. Cancer is so individualized. My personal opinion is that the 720 participants in the study surely must have done things outside the medical box and thrown some of the medical advice out the window to still be around today. I need to think outliers didn’t get where they are from playing by all the rules. It sure would suck if there were no correlations at all and extreme long term survival amounts to pure luck.

I was discussing some of the possible factors determining survival with one of my friends on the tour who has a nursing background and we unscientifically agreed that if an individual thought something made a difference, then it made a difference. I happen to believe the daily exercise I do now makes a difference in my health. I exercise daily and get my 150 minutes each week, usually more. Feeling like I’m doing something positive in terms of my health matters to me. Belief is a powerful medicine. It is one of many attributes and patterns that can’t be measured through this study.

I filled out a preliminary survey for the Outliers Study and felt I provided lots of information on why I feel I’ve survived so far. I am one of the little lines on one of their charts. I haven’t survived long enough to be interesting enough for further study. Someday I will be.

Patient Derived Organoids

Rachel Sundstrom is a research specialist with a degree that’s focused on biochemistry, cellular and molecular biology. Her work involves analyzing patient derived organoids (PDOs). PDOs are cancer cells from patients with breast cancer tumors that are grown in a 3D model. They mimic the biological characteristics of the primary tumors. I think this is what she meant when she talked about organoid morphology and how she is working with different Taxol concentrations that cause cell death, trying to find the just right level for that to happen.

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I had the opportunity to look through the microscope at a sample PDO.

All this work is worthwhile. I spoke to another friend the day before this tour and she told me about experiments where cancer cells were taken from a patient’s body, grown in separate petri dishes, and then various chemotherapies and targeted therapies were tested out to see which treatments the cancer responded to best. I asked if this type of work was being done at Carbone. No, it isn’t. Well, I responded that’s the direction I felt research needed to take. She said some work similar to what I had asked about is being done at the colon cancer lab on campus headed by Dr. Dustin Deming. I have met Dr. Deming and heard him speak about his work with colon cancer treatments. He told me there are some crossovers that may be applicable to breast cancer. Anyway, I made it clear I wanted that kind of work to happen at this lab. Why wasn’t it being done?

It’s expensive.

My response: Yes, research is expensive. People die. That has a cost, too.

I hope my comments were heard and get discussed further elsewhere in the context of future projects being planned. I know a handful of people on the tour that evening had metastatic breast cancer. We were there because of our health and want to live. We support research being done. We want to be outliers. I was not there just to learn and pat them on the back. I want to drive change.

It seemed like the perfect opportunity to communicate, “Is this being done? I would like this to happen here. When will it happen?”

I felt a little like it was the elephant in the room.

I wondered if I was the only one seeing it.

Immune Response Station

Yang Hu presented his graduate work on the effects of Taxol on activating an immune response to cancer cells. T cells are a type of white blood cell that are important to the immune system. They are important because they can adapt and tailor a response to specific pathogens. These cells are often likened to soldiers that target and destroy bad cells. The challenge is to get these T cells near enough to the cancer cells in order to kill them off. His work is showing that paclitaxel/Taxol can stimulate T cell immune responses for some people. His sample size is small, however, there may be a small pattern emerging where triple negative breast cancer (TNBC) patients have responded more to this type of treatment than other breast cancer subtypes.

I would like to know what goes into the process of determining which projects get accepted and researched. The lab was interesting to see. In my mind I pictured it as being very spacious and sterile, filled with high tech equipment, cold, and lots of white. People would walk around wearing lab coats, goggles, and gloves. That’s how TV and movies depict research labs. It wasn’t at all like those images. Every nook and cranny was used. It was crowded with color. I was reminded of how I used space in my old classroom.

I am grateful that these researchers are using their time and talents to dedicate their lives to breast cancer research. Teaching hospitals often have tours of research facilities as it’s one way to promote their work and thank donors who’ve helped make that work possible. My suggestion is it’s well worth your time to find one to tour, learn about what’s being researched, and ask the questions that matter to you. Do some research!

Top Character Strengths

“Our ability to handle life’s challenges is a measure of our strength of character.” ~ Les Brown

Life is challenging. Some folks seem to have more challenges than others, but we all have challenges. A lot has been thrown at me thus far that I’d rather not have dealt with at all. I’d like to think I have continued to grow for the better through challenging times. Chalk it up to an inherent teacher trait that I always need to learn something from situations, regardless of whether the situations are good or bad. I’ve become more hopeful, determined, and resilient over the past several years. I am grateful for these gifts and the opportunities I have had to use these strengths. These are amazing traits, but I am not sure I would have chosen them as main character strengths before my cancer diagnosis.

I would have put kindness, positivity, and a good sense of humor at the top of my list.

Being kind is what I try to show the world and what I expect from others. Our world needs more kindness. I can find a positive perspective in just about anything. Even if something sucks for me, I recognize it as truth and allow myself to be there for a while. My sense of humor has brought a smile to my face when I’ve needed it.

Not everyone gets my jokes.

How we see ourselves, how others see us, and how we truly are may all be the same or different. It’s natural to see ourselves how we want to be seen. Circumstances factor into how we are seen by others. I believe we are a mix of so many traits that are fluid and dependent on what is needed. My virtuous side may shine in the public eye, but I may need to channel my stealth if I were to plan the next great diamond heist. Luckily, I have more of an attraction to pearls. My theme here today is on character strengths rather than weaknesses, so I’m determined to stay on topic and not focus on unflattering qualities. I have those like we all do.

I stumbled across research on character strengths while doing some reading about happiness. A company that researches character strengths referred people to their website for anyone interested in identifying their top character strengths. The idea is to know your strengths so you can use them effectively. It takes about fifteen minutes to rate yourself on how much you fit various descriptions. Directions include responding to how you feel you are and not how you want to be, although I’m sure there is personal bias involved. How could there not be?

According to their research, they assert that people who use their strengths are 18 times more likely to be flourishing and happier than those who don’t know or use their strengths. Flourishing! I wanted to find out what they deemed my strengths and see if I agreed since I want to flourish as much as possible.

According to results, my top three character strengths are perspective, spirituality, and humor.

Perspective

The ability to see the bigger picture and what is best for a situation was my top strength. I can see the big picture but am also detailed oriented. Some describe this as seeing the forest and the trees. I think being able to think mindfully about situations has helped me consider the advantages and disadvantages of a situation. Having made my share of mistakes and learning from them also has developed a sense of knowing that comes with looking at different viewpoints. Having different ways of looking at the world helps make sense of it.

Seeing alternate points of view is important. I can apply this to my own life in a way where I listen carefully and weigh all possible sides. It’s harder to do when there are heavy health decisions to be made. The best options moving forward may involve hard parts but still be in my best interests. How will treatment options and side effects affect my quality of life? What are the chances of success? Am I a good match for a proposed treatment? Why is it being suggested for me? I make a lot of pro and con lists. I weigh some factors more than others. I look at the facts I have. I consider my feelings. I ask the people I trust for input and their valued perspective.

Careful listening is needed to understand and value perspectives different from yours. Doing research so I can make informed decisions is important to me. Asking questions fits here too. I won’t discount intuition because even after all the research has been gathered and all the questions have been asked, there is a feeling about what the right choice is for me.

Spirituality

Spirituality was my second highest strength. It reflects a sense of meaning and purpose in the universe. It’s a search for the sacred whether that’s secular or nonsecular.

I was surprised this strength ranked so highly. I used to identify very strongly with spiritual ideology and concepts around faith. It’s been shaken. I don’t believe having cancer has shaken it as much as the rigidity of the religion that I’m a member. I question more and I believe questioning is good. I am not going to narrow the sphere of spirituality to religion. Spirit to me has become a much larger force and a person’s chosen religion or choice not to be religious doesn’t determine a person’s faith, spirit, or worth. There is no one way for everyone to be spiritual. We each find our own way.

How can I use spirituality as a strength living with cancer? I know I am more than this body where I currently reside. My views on the afterlife have evolved. I have pondered a great deal about the meaning of life that influence my choices and give me peace. There is some sort of transcendence at work that allows me to connect to something greater. I have a peace journal. I meditate. I pray. I engage in discussions about faith with close friends. I feel a connection to the universe when I’m in nature.

I can still talk to my parents and feel their presence. I talk to God daily. I let myself be quiet and I listen to the stillness.

Humor

I’ve always found situations amusing. Sometimes not at the time, but I could laugh at them later. It seems I can make other people laugh even if it’s not my intention. I will choose a comedy over a drama. Children and their natural shenanigans are gold mines for humor. Stephen Colbert and his writers craft a masterpiece nightly with his monologue that has made the past couple of years more bearable. I have become a fan of good political satire. I love being around people who can make me laugh. It’s a quality I look for in strong relationships.

How can I further use my sense of humor as I live with cancer? It’s very useful in dealing with stressful situations. Cancer is stressful. Seeing the lighter side in a situation reduces stress. A person living with metastatic breast cancer faces a lot of adversity ranging from medical obstacles, social relationships, and navigating through it all off road because it is a wilderness. A good sense of humor has the potential for transforming something negative into something positive because of a shift in perspective. My former oncologist and I had such a good chuckle over a theory a radiologist gave about why I had severe muscle cramping to the point of hospitalization. His theory was I wasn’t moving around enough in the MRI tube. It is just absurd! There isn’t ROOM to move around in there and you need to stay motionless for the imaging to be accurate. The radiologist knows a person can’t move around in there. I shared the story with my oncologist and he said, “What are you supposed to do – jog around in there?” The stupidity behind this utterly false theory is astounding, but the image of jogging in an MRI tube cracks me up every time. Being in good humor doesn’t necessarily mean you are laughing all the time. It’s more of an outlook you carry with you.

How a person handles life’s challenges certainly is an indicator of their character. I will strive to handle mine with a perspective that affords me meaning, a sense of humor, kindness, positivity, and a dash of grace if I can get it.

 

Consider responding:

What do you feel are your top character strengths?

How do you apply your strengths so you flourish and make the most of them?

Click here (viacharacter.org) if you have an interest in completing the survey for yourself to learn about your top character strengths. It’s free to take and get results. I am not affiliated with them in any manner.