My Most Protective Option

Choosing my most protective option has lately become a repeated refrain for me. I find myself comparing choices as I deal with a smaller world for myself and what I am able to do with limited options available to me.

In a school setting, teachers always followed the principle of providing the least restrictive environment for students with special needs. I came back to that idea time after time in work with special education teachers and instruction for students. I want the same type of tried and true standard for the circumstances I now find myself in as I shelter at home. The least restrictive environment would do nothing for me. Heck, the least restrictive environment would place me out and about without a mask in large crowds with strangers. What I needed was the exact opposite of the least restrictive environment. The most protective option fit perfectly. It fits every decision I’ve needed to make so far.

Medical

Being in the same room with my oncologist is preferred. I have been open to visits over the phone and video style because it mainly seems I have little choice. I could hopefully see her if I needed some type of physical interaction. If I’m choosing the most protective option, I must go with a remote visit. I may feel differently after a few months. Telephone and video have limitations. Eventually, the most protective option may be to see her in person as it may yield results that you can’t get without contact. Meeting face to face could eventually be more protective as circumstances vary.

My treatments have continued as scheduled. An army of gatekeepers and temperature takers await me at the uncrowded hospital entrance. Hallways are unnaturally empty. No one waits in waiting rooms and people are sent to their treatment bays immediately. I wait there alone. The nursing staff is cheerful even though they wear masks and protective face shields. I was not happy with the answers I received about how many days (yes, days) they were asked to wear the same surgical mask before getting a new one. That is most definitely not the most protective option for them even with a face shield. Protecting myself involves that those I have contact with are also protected. I do not want to be overly critical. I do want everyone to stay safe. I’ll follow up with a few more questions at my next visit.

Groceries

Getting groceries has evolved into quite a process. March 13th is the date I started social distancing and staying at home. Wisconsin’s Safer at Home order took effect on March 25th.  I could still shop during the first hour of business assigned as a courtesy time for the elderly and those with underlying conditions if that was my only option. It would still put me in a public setting. My other options are delivery or curbside pickup. I haven’t been able to nab a delivery time. Instead, I focus on getting a curbside pickup timeslot every two weeks. Slots open up online one week in advance at midnight. They are gone within minutes. I am sleeping and hopefully lost to my dreams at midnight, except when I need to reserve a grocery time. One night after I reserved a spot, I noticed all the available times were gone within ten minutes. It has gotten even more competitive since then. Last week they vanished within three minutes. Three! I am not sure exactly how many are offered each day, but the demand is much higher than the supply. I am thankful I got one and that for now I have figured out what I need to do in order to get what I need. Things change quickly. I just learned the window opens up at 1 PM rather than midnight. Time will tell if that switch makes ordering even more competitive.

I admit it also makes me sad that grocery shopping strikes me as a cut-throat world. My oncologist advised me to take this route as a way to keep myself and others I may come in contact with (like her) healthy. This is something I can do for me and for her. I feel some guilt in taking a spot that is in such high demand. I can stretch items and plan menus so I am more than comfortable shopping every two weeks rather than shop every week. At the same time, I need this service as much as someone else, so I must do what keeps me safest. It’s my most protective option. I will choose it every time.

Reserving a time involves multiple steps. Getting the groceries into my home adds several more. Items come out of boxes (cereal, protein bars, yogurt) so I don’t need to bring boxes into my home. Plastic items get wiped down with Clorox. Blueberries, blackberries, and other small fruit are taken out of their plastic containers and put into glass containers. I dunk foods in soapy water and rinse them. There is a sanitized and not sanitized half of my counter as I unload items. My groceries have never been cleaner. It’s exhausting and insane. Right now, it’s what I do thanks to a viral YouTube video.

Hair

When my hair grew back in 2013, I was done with coloring it. It could be natural. I was firm about it. I had to staunchly defend my choice to one or two who couldn’t understand it even though it had nothing to do with them. There’s always a critic. My hair was beautiful. A silver curl framed my face in a striking spiral. When it grew back in 2019, it was a lot grayer than before. I felt so old and felt I looked washed out. My wig was a much younger look and I liked what it did for me. I chose to get on board with coloring again and that was that. I certainly never thought a situation would unfold that would prevent me from getting my hair done. I have hair. I have quite a lot of hair. It is ironic that I can’t get it done or go anywhere. Who knows where I’ll be on the cancer road when stay at home lifestyles finally are no longer necessary.

I took matters into my own hands and colored my hair on my own. I ordered some that was free of parabens, sulfates, phthalates, and ammonia. It didn’t sound like it was too hard. The directions were straight forward enough. The company had videos to watch. What could go wrong? The only places I go are to my oncology appointments and to pick up my grocery order. No one sees me so now was as good of a time as ever to try something new. Chalk it up to a massive need to feel in control, but there is a bit more to it. I wanted to feel good about my appearance. Perhaps that sounds vain. Having hair that looks decent goes a long way for this metastatic breast cancer patient who wore a wig for three years. I want to keep my hair and I want it to look good, even if no one sees me. I see me.

Inconveniences vs. Problems

Rabbi Steve Leder appeared on TODAY with Hoda & Jenna earlier in April. He offered excellent advice on perspective and encouraged people to distinguish between inconveniences and problems. Not being able to go to a restaurant is an inconvenience. Having bad hair truly is an inconvenience. It sucks but it doesn’t make it less true. Not being able to breathe and needing a ventilator is a problem. Not having any food or a means of getting food is a problem. I need to remind myself that what I am experiencing personally through this so far have been inconveniences. I may shed a few tears as a way to deal with my feelings, but my issues remain identified as inconveniences, not problems. You can listen to the brief interview here.

Choosing my most protective options will continue to guide me in the days ahead. It offers a solid way for me to evaluate choices and make consistent decisions. It removes my feelings and provides me an objective format. Hopefully, it will make tougher decisions much easier because the safe choice is usually an obvious choice.

It won’t help me figure out if I should bake chocolate chip cookies or brownies. This isn’t an inconvenience or problem. Neither option is more protective than the other. Perhaps my litmus test doesn’t hold up in this situation.

Luckily, I know what I must do.

Making A Run For It

I am not a runner.

The only thing about me that runs is my nose as a side effect from treatment.

I hated running in high school. Every step of the yearly running test was agony. It made me feel like I wasn’t good enough because I never did well and always walked some.

At the end of 2019, I saw a comment from one of my friends who works at the UW Foundation who has been a main support to me as I’ve worked to raise more funds for metastatic breast cancer research. She had written a supportive comment on someone else’s post promoting a 5K race for UW Carbone.

The race is on May 30th.

My birthday is on May 30th. My 50th birthday.

Uh-oh.

Thoughts are faster than any runner. I knew in a flash what was happening. My thoughts are italicized.

 Don’t even think about it.

 You are not a runner.

 Don’t be ridiculous.

You don’t enjoy running.

You can’t do this. You have metastatic breast cancer. 

You have never run a 5K.

You haven’t even tried.

Because it’s insane.

You’re insane.

But you’ve seen this information and you can’t un-see it.

 The idea is already there that it would be an awesome way to greet your 50th birthday in victory. It sure would show cancer a thing or two.

It also would be a miracle, but you’re a lot stronger than you were last year. 

You know what happens once an idea has already rooted. 

It grows. 

Dammit.

You’ve envisioned crossing the finish line.

You’re apparently doing this. Keep it to yourself so others don’t think you’re unrealistic, too ambitious, or crazy.

What’s wrong with you?

I started doing some research on 5K training schedules. I learned most schedules intersperse running and walking and eventually phase out the walking. I would manage by building my abilities slowly.

On days that I didn’t strength train or walk outdoors, I worked on my running plan, slowly building endurance and running stamina and keeping the embers to do this burning inside me.

I also started working with a running coach. Get this – it turns out I already had a perfect gait from my gait analysis and good rhythmic breathing. Who knew?

I might be a runner.

My mind throws obstacles in my way. It’s really good at that. A sliver of doubt that sneaks in has more weight than all my positive affirmations, mantras, and visualizations. It shakes my goals. I struggled at home on my treadmill in extending my running minutes and lessening my walking recovery minutes. Breathing was harder to manage. The fun phase was over. I realized all the hard work that lay ahead.

Ah-ha! I knew it wouldn’t last. It would be best to give up and enjoy something easier.

 No, it wouldn’t. Stick with this and figure it out.

Be stubborn. Rely on that irrefutable strength. Being stubborn is more important than your physical capabilities right now.

 I am in this for the long haul.

It’s time for another session with your running coach.

More physical obstacles showed themselves. I broke out in a rash fairly early on in my efforts training on my own that kept coming back every time I ran and got so hot. It was exercised induced. My body eventually accepted what I was doing to it.

Take that body. I won.  

I officially registered for the Race for Research at the end of January and formed Team 50. My heart felt choosing Team Pokey for a name was a better fit, but I wanted to keep messaging consistent with messaging from other fundraising goals.

My running coach wrote out plans for me. I worked on interval training mixed with strength work. I would vary the speed and incline, hop off the treadmill and do some lifting drills that runners do, and then repeat for 5 times. I was amazed at what I could do.

I practiced progression runs of varying paces and runs with varying inclines. I could do them. It was a challenge, but I could do them. It made me feel accomplished and athletic. Feeling athletic in the midst of metastatic breast cancer is not me. Feeling athletic was never me.

Except athletic has become me over the span of six months.

Okay, semi-athletic. Keep it real.

I worked on treadmill progressive runs, inclined runs, surge runs, and made it outdoors a couple of times. I was hitting a 5K fairly easily on my treadmill. Then COVID-19 hit. One by one, my plans disappeared. The Race for Research is the last event standing and I suspect it will either become a virtual run or be rescheduled for fall. Gathering cancer survivors, those being treated for cancer, as well as their supporters together at a crowded event, even if it’s outside, doesn’t align with physical distancing. The UW Carbone Cancer Center will make the choice it needs to make.

It will be a major disappointment, albeit necessary.

It is a miracle I’ve even endeavored to run. I experienced hand-foot syndrome several years back which made walking extremely painful. Neuropathy has been present at some level since my original chemotherapy. I ignore it. I’ve worked really hard to get to where I am.

If COVID-19 sidelines the race, it will not sideline me. I have mapped out a 5K loop in my neighborhood and will run it on my birthday. I’ll invite a few friends to come cheer me on at various points along my route (all six feet apart – more like six blocks apart). COVID-19 will not take it away from me. It may take away my VIP status and prevent me from speaking at the race about the deep hope I have for research at UW Carbone, but it won’t take away what I’ve been working for, sweating for, and fighting for since December. It can’t take away the hope I am always striving to give others.

No way.

If you know me, you know I will find a way to get this to happen and make the best of it.

I’d love to say I’ll do it rain or shine, but if it’s rainy I’ll postpone my moment in the sun for a time when it truly will be a moment in the sun. I’m stubborn but not completely crazy.

I have been unknowingly making a run for it for many years.

I have been a runner all that time.

I won’t stop running.

I am a runner.

Watch me.

 

April 16, 2020 update: The Race for Research has been canceled. It will return on June 5, 2021. Onward to Plan B for me.

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.

IMG_0422

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.

DSCF3702

 

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.

ee1a877c6442617cd1fcf333574e7d09

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.

fullsizeoutput_882
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.

fullsizeoutput_887
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.

fullsizeoutput_880
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!