Giant’s Ladder

Trust must fill the place vacated by the absence of fear.

Since I’m not traveling over the summer due to COVID-19, I am reminiscing about former vacations. My memories take me again back to Miraval.

Giant’s Ladder was another challenge activity in my Arizona getaway. It was described as integrating trust, balance, and cooperation as you climbed a giant ladder that was forty feet high. Participants were also told it was the most physically demanding of the challenge activities offered. It sure was. The eight rungs of the ladder were spaced anywhere from four to six feet apart. In my opinion, most of them were more on the six feet apart end of things. Only the first level was truly manageable. At least for me.

I partnered up with a woman who also traveled alone who had a background in education. Mallory was in the music department at Northwestern University. You could do the activity alone, and apparently there had been people who got to the top on their own, but I don’t see how that could happen. My perspective was lacking in this area. I definitely needed a partner in order to make the smallest of progress on the ladder.

The two of us did an outstanding job of communicating, working as a team, and problem solving. I wasn’t worried about not trusting her, or falling, or balance either. The harness was so secure. The team who belayed the climbers from solid ground below always were poised and ready the entire time to release rope and pick up slack.

I was safer than gold in Fort Knox.

Feeling safe is a huge component of trust.

Without safety, there is fear. I think back to a few moments in my life where I have felt physically unsafe. Fortunately, there have been few of these, but accompanying each has been a terrorizing fear. When I feel safe, I also feel confident whether I am in control of events or not. When I feel safe, there is a prevailing calmness within. When I feel safe, I trust. Safety, confidence, and calmness all attribute to trusting people, situations, and life. In the Giant’s Ladder, I felt safe, confident, and calm. I trusted my partner and the people below who belayed.

The hard part of the challenge was the pure physicality of it. My upper arms got bruised badly, multiple times. The backs of my knees took a beating. I looked very battered the next day. I only made it up about two rungs in the hour that was allotted. Getting to the top would have brought about more lessons in confidence and conquering obstacles. It was the goal, but learning still happened with my limited progress.

People are always there to support me.

People are ready to catch me when I fall.

We all need support. We all fall.

Part of trust is also letting go. You can reread last week’s post on letting go here. Letting go is the bridge between fear and trust. I see this bridge as one of those bridges high above a chasm that sways perilously as I trod carefully across it. Wooden boards are missing underfoot. Rope supports don’t provide much security to my white knuckled hands. The distance to the other side, from fear to trust, is a great divide. But step by step, I scarcely breathe as one foot steps in front of the other. I have to let go to get to the other side.

Metastatic cancer definitely makes me feel unsafe. There have been times where I’ve felt utterly out of control. It takes a lot of reminders that these feelings are just feelings, they are not who I am, and that they will pass. Somewhere there is meaning in all I’ve experienced.

I still have much work to do.

Let It Go

Let fear go.

Fear has been on my mind a lot lately.

Fear prevents people from living.

It prevents people from making changes. It prevents people from accepting the changes that happen more gracefully.

Years back in 2008, I vacationed at Miraval Resort in Tucson, Arizona. Miraval is about an hour outside of Tucson, located in the foothills of the Santa Catalina Mountains in the Sonoran Desert. The philosophy at Miraval is one of life in balance. One of my experiences there illustrates facing and engaging fear effectively.

I chose Miraval in order to relax somewhere warm over my spring break. In addition to the spa amenities, challenge activities were offered every day. Part of the Miraval experience was about going out of your comfort zone and challenging yourself. I signed up for something called Swing and a Prayer.

In Swing and a Prayer, a person is attached to two cables, hoisted up around 35 feet or higher, and then released from one cable and left to swing as if on a giant pendulum. This definitely took me outside my comfort zone. At this point in my life, I considered myself a fairly confident person who felt like I could achieve goals I set out to do. Yet, numerous insecurities had popped up in life as they do. Swing and A Prayer was to help me learn to approach life more fearlessly. Then I could transfer what I learned to other parts of my life.

Nine participants including the instructor set out for the challenge one morning before it got too hot. Everyone wore a harness. There were two cables. One was the pendulum cable. The other one you released so you could swing. The instructor secured someone to the cables. We worked as a team with the ropes to slowly hoist the person upward tug of war style, hand over hand, until the swinger was at maximum height. Think of being at the top of a telephone pole. At that point, the instructor held onto the rope until the swinger from above let go of their end to commence the swinging. A lot of synchronization and teamwork was involved.

Yes, you read that last part right. The swinger had to actively let go, release their tightly held grip, in order to swing. It wasn’t some automatic release like on a thrill ride.

It was a conscious, deliberate action.

The mental and spiritual parts of the challenge were about facing the unknown and letting go. Both are such strong metaphors for life. We fear too many things and usually the fear itself is far worse than the experience. People spend too much time in their comfort zones. Every day of life is unknown. Face the unknown. Be good with it and go with the flow.

Letting go is perhaps the strongest lesson from Swing and a Prayer. The higher I was raised, the harder it was for me to physically hold on to my part of the rope. I could feel and see my hand slipping bit by bit. Chalk it up to no upper body strength and sweaty hands. It was more work to hold on to the rope than to let it go. So it is with many of the tensions, difficulties, and stresses in our lives that we hold when we really need to let go. Don’t think. Just let go.

Let it go.

Face the unknown.

Be in the moment.

When I let go of the rope, I experienced total stillness. There was a second between letting go and starting to swing that felt stretched out and absolutely quiet. I felt suspended in air. There was such stillness. I felt so calm. This is what it is to be in the moment.

Next came the swing. It was smooth and flowing. The first swing outward and then back to my starting point were the most exhilarating. I felt like I was flying and is probably the closest I’ll ever come. The sound of air rushing by filled my ears with a whirring sound. And yes, I screamed. It wasn’t a fearful scream, but more of a beautifully long “Whooooo – whooooo.”

I want to remember that feeling of release and stillness. How good it would be to release worries, fears, stress, sadness, anger, and anything else that I shouldn’t hold anymore. All of this happened before my diagnosis. Life is different now than in 2008, a lot different, but releasing energies that no longer serve me is still as important now as it was yesterday and will be in the future. They are hard to release. They are hard to hold.

I want to remember it was more work hanging on than in letting go.

Something written by Reverend Safire Rose beautifully captures these feelings. A good friend sent it to me several years ago and it is the perfect way to finish today’s post.

She Let Go

By Reverend Safire Rose


She let go. Without a thought or a word, she let go.

She let go of the fear. She let go of the judgments. She let go of the confluence of opinions swarming around her head. She let go of the committee of indecision within her. She let go of all the ‘right’ reasons. Wholly and completely, without hesitation or worry, she just let go.

She didn’t ask anyone for advice. She didn’t read a book on how to let go. She didn’t search the scriptures. She just let go. She let go of all the memories that held her back. She let go of all the anxiety that kept her form moving forward. She let go of the planning and all of the calculations about how to do it just right.

She didn’t promise to let go. She didn’t journal about it. She didn’t write the projected date in her Day-Timer. She made no public announcement and put no ad in the paper. She didn’t check the weather report or read her daily horoscope. She just let go.

She didn’t analyze whether she should let go. She didn’t call her friends to discuss the matter. She didn’t do a five-step Spiritual Mind Treatment. She didn’t call the prayer line. She didn’t utter one word. She just let go.

No one was around when it happened. There was no applause or congratulations. No one thanked her or praised her. No one noticed a thing. Like a leaf falling from a tree, she just let go.

There was no effort. There was no struggle. It wasn’t good and it wasn’t bad. It was what it was and it is just that.

In the space of letting go, she let it all be. A small smile came over her face. A light breeze blew through her. And the sun and the moon shone forevermore.

Fundraiser Reflections

My Nifty 50 fundraising efforts have come to an end. I realize I have blogged often about this over the past ten months. This is it . . . very definitely maybe. Yet, it’s been a very successful part of my life. Success is important in the life of someone living with metastatic breast cancer. Success needs to be celebrated. I know I’m tooting my own horn a bit with this post. It is strange territory as I consider myself quite modest. I often look back on completed tasks to reflect on what I’ve learned and reasons why I think something worked. The “reasons why I think something worked part” may be of particular interest to anyone reading who has an interest in fundraising.

My goal was $50,000. The current total is $60,050.

Not too shabby for a fundraising rookie.

Here are a few of my reflections on the process and reasons why I think it worked.

Connections

I was fortunate to connect with the right people who could help support my vision. I worked regularly with two contacts at the UW Foundation who supported my goal. I know these connections wanted me to succeed. My success raised needed funds. Using a MyCarbone personalized fundraising page gave me a platform where I could reach many.

I also spoke often with Rob and Mary Gooze who founded the More for Stage IV Fund through UW Carbone. I learned a lot from their experiences. Their support was phenomenal. They have been in the fundraising world for over six years. Everything they do is polished and professional. Both always pointed me in the right direction whenever I needed to run something by them.

Connecting with the right people and using a platform that many have access to are huge supports when trying to raise money and reach people. News stories on TV helped a lot with outreach, too. Successful fundraising must reach past family and friends. Bigger and bigger circles mean more and more people are hearing about the need for more funding and research for metastatic breast cancer.

Bigger Than Myself

What I accomplished was bigger than myself. And I did it from scratch. There are those in the world who operate from a lens of only how events affect them as individuals. I wasn’t asking to fund a vacation or go on a shopping spree. It wasn’t about me. I worked for the greater good. One reason why I think so many embraced my goal was that it affected so many people. Research affects all of us. 42,690 women and men will die from MBC this year – that’s almost 117 a day. I am fully aware it takes years for an effective drug to go from research trial to FDA approval. My hope is research funded in part from Nifty 50 will benefit many men and women down the road. I’m hoping to benefit from all scientific developments available to me that the near future has to offer. Treatments that are available thanks to someone else’s fundraising for more research.

Coming Together

This project gave people an opportunity to join something where they could be part of something that grew. It feels good right now to be part of something where you can support it and feel like you made a difference. I know I made an impact. Events that were held brought people in the community together. I hope I changed perceptions on breast cancer research and people understand that MBC gets a pretty small sliver of funds designated for breast cancer. I know I got people talking in my neighborhood. I heard from old childhood friends, classmates and friends from my graduating class in high school, lots of friends and colleagues from more recent teaching days. I heard from former neighbors who had moved out of state. I also heard from many people I don’t know and probably never will meet. I read story upon story in comments from those grieving and honoring loved ones who felt compelled to share a part of their story. Nurses from both the cancer clinic and cancer center chipped in and offered me encouragement and their thanks. I am in awe of all of these humans who are amazing on their own and part of a wondrous whole.

Support

The support I felt personally from those messages written on my page lifted me more than I can say. I cried a lot reading those. Some encouragement was loud, some support was quiet, and some was anonymous, but all of it kept me going forward. The outpouring of support made me feel like my actions mattered. I felt people heard me. It made me feel a bit like George Bailey at the end of It’s A Wonderful Life when the whole town showers him with support. I’m no George Bailey, but I felt how I imagine he did at the end of the movie.

Planned Like a Teacher

I approached my fundraiser like a teacher. Teachers make something out of nothing all the time. We call it a school year. And we do it repeatedly. I mapped out ideas and strived for an event or focal point each month. Plans often were revised much in the same way as lesson plans got modified. Nifty 50 gave me a very strong sense of power and purpose, much like teaching did. Nifty 50 made me tired and at times a little stressed, much like teaching did. Kindness was a cornerstone of my classroom. Gratitude still matters in everything. I’ve sent thank you letters to all donors (except for the anonymous ones) featuring photos and highlights of events throughout the year. I wrote personalized notes at the bottom of each. There was a beginning and end date to Nifty 50 just like a school year. Summer provided rejuvenation in between school years. I was always excited to go back in fall and do it all over again from beginning to end. Herein is a problem and some unsettled feelings for me. There is no next fundraiser. I am just done and don’t quite know what to do with myself. Where is my purpose now? I don’t know. I need a bit of a rest and need to focus on me for a bit.

Monumental Achievement

I did it. Me. I don’t typically bite off this much.

And I did it while living with metastatic breast cancer.

AND I completed my efforts during COVID-19.

Sometimes I am the person I’m trying to convince that I can still accomplish quite a bit. Having purpose and goals gives me focus and a place to direct my energy. I hope people remember well after my fundraiser has faded away that ideas that might seem out of reach are possible. It was called ambitious at the beginning by some. Lofty was another word I heard it described as recently. Hmmm . . . I still have to talk to one of my friends about calling it lofty. Ambitious and lofty aren’t necessarily negative terms, but in my mind those words have always been connected more to unobtainable goals rather than determination. I’ve always aimed high. I wanted this to happen. I had quite a bit of control in getting it to happen. I planned events. There was publicity. I stayed persistent and kept hammering away at what I wanted from different angles. A lot of my time and efforts were devoted to this work. I surrounded myself with effective people who knew more about fundraising than I did. I asked a lot of questions to find out what I didn’t know and what I needed to do to get something to happen. I heard NO perhaps more often than I heard YES. Every YES was vital. I even turned a NO here and there into a YES with some reframing.

I have done many things in life. This undoubtedly was something I didn’t expect I would do. I’m proud of what I accomplished. I hope people see that one person can create a spark that creates a fire. We are better when we work together.

I end by referencing the movie Field of Dreams. Ray (played by Kevin Costner) heard a whisper in his cornfield. He heard the now famous phrase, “If you build it, he will come.” Ray believed. He built it. Then Shoeless Joe Jackson came along with many others. My word for 2020 is BELIEVE. I believed I could achieve my goal. I built it. People came. I think it’s the belief in something that is sometimes the biggest reason why something works.

Keep believing.

Homestretch

In two weeks, I will celebrate my 50th birthday.

I was 41 years old, close to 42, when I was diagnosed with metastatic breast cancer. I grieved many losses. I still grieve because loss is ongoing. The odds weren’t in my favor I’d see my 50th birthday. I am going to see it.

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I’m looking older but hopefully wiser.

After I celebrated my 49th birthday, I turned my attention to a seed of an idea I took from a fellow survivor. Alicia Neubauer raised over $40,000 for metastatic breast cancer research for UW Carbone to celebrate her 40th birthday. What an impressive accomplishment! Could I do the same and raise $50,000 for my 50th birthday? I sure could try.

I met Alicia two years ago at a banquet for UW Carbone donors. She had driven up from Rockford, Illinois. At the time, she was finished with active treatment and wasn’t diagnosed with MBC.

That changed.

Alicia died in early April.

I didn’t know her well. She was kind and giving. We spoke on the phone where she shared some fundraising tips about what worked well from her experience and some ways to publicize what I wanted to do. We stayed connected and exchanged messages on Instagram.

Even though I didn’t know her well, it makes me feel profoundly sad that she is gone. It happens too often when I hear news of another grandmother, mother, daughter, sister, or friend that has been lost in the cancer community. Someone else I was just getting to know died from MBC last September. A daughter-in-law of a family friend died last week from lung cancer that had spread quickly. Men aren’t to be excluded either. Cancer isn’t picky and doesn’t discriminate. It is very cruel and unfair.

I’ve lost close family members due to cancer. So have my friends. Grief is a powerful bond but watching friends mourn reminds me that grief is a deep well of sadness. There is always room for more.

The need for research is needed more than ever. Funding research is also like a well that never fills. More is always needed.

Raising money has been a driving force in my life over the past year. There have been news stories. Fundraisers have been held around jack-o-lanterns, yoga, kettlebells, Ukrainian eggs, photography, and Pampered Chef products. Local businesses have been involved in the community. Events have been promoted via community bulletin boards. I’ve learned how to use social media. I’ve put aside introverted qualities to advocate for something much bigger than myself. Letters have been written soliciting end of year donations. I’ve sent hundreds of thank you letters that I’ve shed tears while writing because I’m so moved by the support I’ve been given.

I’ve even trained for a ridiculous 5K that has been canceled because of COVID-19. I’ll do it in my neighborhood on my own terms because that’s how I roll.

All events give more exposure to the need for more research. All treatments available today started as research. Research equals hope. Research works.

People have been incredibly generous and supportive. It means a lot to me to have support in my effort to raise money for metastatic breast cancer research at UW Carbone. Each donation makes an impact.

I’m delighted to share I’ve broken the $40,000 mark and am in the homestretch.

And so, I’ll ask.

There are many reputable charities that do much needed work. Everyone has a cause that is near and dear to their heart. Now is a time when incomes may be significantly lower. People may not be able to support charitable giving. I understand.

It’s projected that 116 people per day would die from metastatic breast cancer in the U.S. in 2019. I don’t know what the projected number is for 2020. Due to COVID-19 and an effort to limit exposure, diagnostic tests such a mammograms and some scans to access growth have been canceled or delayed. I have heard of some treatments being paused, or trials not accepting new applicants. Those of us with MBC are quietly hunkering down and trying to stay safe until the pandemic is over. It’s harder for us. I’ve been quiet . . . but I have to start speaking loudly again. I will not accept negative effects to my health as some kind of collateral damage from this virus. I want to live. We all want to see the other side of this and come out of it alive and not damaged from any treatment breaks caused by COVID-19.

Cancer doesn’t wait for curves to flatten or quarantines to end.

100% of donations from my fundraising page go to metastatic breast cancer research at UW Carbone. Research will help many. Click here to donate and read more about what I’ve worked on over the last year. Click here if interested in a video about work done at the Carbone Cancer Center.

I remember when my fundraising page went up last August. I made an initial donation that showed up as a small red dot on the fundraising thermometer. The rest was all white and I wondered if it would ever become redder. Slowly, bit by bit, it grew. It was very satisfying to watch it grow as person after person pitched in to support more research. Every little bit truly helps. It adds up. Now is the time to make that thermometer turn all red. I am grateful for all donations. I appreciate your consideration and support.

My birthday will be a lot different than I had planned this year. Pandemics alter plans. My 50th birthday arguably will be smaller, possibly a party of one. There will be cake. It will still be special as I remember everyone who has supported more research and my goal. I’ve celebrated with every donation made to my page. Every event has been part of my year-long party. I’m only going to turn 50 once, so I will make the most of all the goodness I have.

I will find a way to celebrate.

Always.

Baby Robin Rescue

“There was a baby bird in your tree we took down,” explained the tree man, pointing to the ground at the side of my house. “It’s there in its nest.”

Tucked under the downspout and against the bricks was a nest that held a rather large, fluffy, baby bird.  Its home had vanished into the tree chipper, its mother wouldn’t know where to find it, and night was falling. Thunder grumbled softly and the sky flashed Morse code that a storm was near. Humidity hung in the air, thick and uncomfortably sticky.

“What should I do with it?” I felt I should know but I didn’t.

It was clear the baby was a robin. It’s grayish-brown feathers filled the nest entirely, but it still looked too young to fly. Its little beak opened and closed expecting food.

“You can just leave it there for the night,” said the man. I sensed the attitude was to leave it in nature as close to its original home as possible.

I knew instantly I was not leaving this motherless, little baby robin alone on the ground where it was completely helpless and unprotected. It wouldn’t survive the night. Should I take it inside with me? Was there someplace else I could leave it outside? Even though I hadn’t held the chainsaw, I still had destroyed its home. Mama robin wouldn’t find it.

Ilene is my neighbor who also very conveniently is a vet. She was outside trying to get her lawn mowed before it stormed. Lightning flickered more regularly in the sky. I couldn’t wait much longer. It was getting dark and the baby bird still had nowhere to spend the night.

“Ilene! Do you have a second?” I shouted above the motor and motioned in my direction. She stopped the mower. “I have a baby bird here.”

We talked over the options. No, she could not take it. They didn’t work with rescue animals at her clinic. There was a vet clinic off the beltline on Rimrock Road that was open twenty-four hours and took wild animals. That was a possibility. Finally, we decided it was best to put the bird and its nest cradled on top of an abandoned nest in a bush to the side of my house.  It had a better chance there than on the ground. With flashlight in hand, we safely nestled it in.

My next job was to dig up a couple of worms for it and try to feed it. Sweat rolled down my face and back. I couldn’t see where I was digging.  Multiple holes were appearing in my garden and there was not a worm to be seen. Why was it so hard to find a dang worm? This was crazy. I was crazy.

After about ten minutes I abandoned the worm quest. Plan D was now in motion. I would take the bird to the vet clinic.

Flashlight in hand, I retrieved the baby robin, put it in a box, and placed it on the floor on the passenger side of the car. Tired and sweaty, off I went, hoping the thunderstorm wouldn’t hit until I returned home. My mother’s voice spoke quietly in my head, “Don’t go. Stay in for the night. You’ll get wet.” But my mother wasn’t around anymore. It was just shy of a month since she died, but she was still there chattering away at me.

I didn’t mind.

Keep in mind, I also didn’t listen.

I knew my actions were some type of response to feeling alone and a deep need to fix the unfixable.

Baby bird made some sounds. “Tweet, tweet.” What was it saying? I didn’t speak bird but decided to tweet back anyway. “Tweet, tweet, tweet,” I said.

The sky let loose torrents of water which made it tough to see the road. It was one of those downpours where you feel like you’re continuously under a waterfall and the windshield wipers can’t keep up. All this felt so insane on several levels. Tweeting back to the little bird was somehow comforting.  We tweeted back and forth for the rest of the trip until I found the clinic.

I covered my little bird with my coat and ran the box into the clinic. I suspiciously eyed an orange cat that was sitting on a bench just inside the door licking its paw. A woman at the front desk smiled and took the bird to the back room. That was it, I was done. I headed back out into the stormy night.

When I got back and buckled up in my car, I realized I hadn’t said good-bye to my bird.

Yep, I heard it.

My bird.

Somehow that little animal had become mine in a time span of less than an hour. Maybe it was mine the moment I saw it on the ground . . . I don’t know.  But I did know I had to dash back through the rain into the clinic so I could say good-bye.

I’ve been this way for a long time. I’ve learned to be okay with it.

“I’m back,” I announced as I dripped in front of the receptionist.

Foolishly I added, “I didn’t get to say good-bye to my bird.”

She stared at me for a long moment before disappearing into the back room and returning with the robin.

“Bye, bye,” I said. “Be a good little bird.”

I felt I needed to add a few tweets in there to make sure it understood.  I already felt foolish, so there was no point stopping. “Tweet, tweet . . . tweet, tweet.”

I think it understood.

Somehow, I think my mother did, too.

RAIN and Self-Compassion

Life is crazy these days.

Crazy.

That is the word I keep coming back to over the course of the last month, weeks, and days. It’s even applicable to hours and minutes. It is difficult to escape because our lives have transformed to the confines of our own homes. The top story on local and national news now is the entire broadcast. Attempts to escape real life and watch a show on TV is interrupted with advertisements about how life has changed. I fill my time fairly successfully. The day still can feel long when I’m isolating alone. It’s almost too much.

I am tired of feeling stressed, overwhelmed, worn out, or numb by life these days.

Tara Brach is a well-known psychologist and author. Her work blends together Western psychology and Eastern spiritual practices. She is huge in the world of meditation and mindfulness. One of her main tools is rooted in the acronym RAIN and is a way to connect with self-compassion when experiencing emotional difficulty.

These crazy times have their share of emotional difficulty. My plan today is to share more about RAIN and how it works.

R – Recognize what is happening.

A – Allow the experience to be there, just as it is.

I  – Investigate with interest and care.

N – Nurture with self-compassion.

R – Recognize what is happening.

What are the thoughts, feelings, and behaviors affecting me right now?

Me: I am PISSED OFF about all my plans falling apart. A Triple F would fit nicely here. Travel, birthday, entertainment, and fundraising plans have been canceled. My birthday isn’t canceled but I’m starting from scratch. Whatever alternate plans I make may also get scrapped in the end. Workouts and book clubs are all experienced remotely. It’s depressing.

I feel like I’m not living and there was a successful effort to live each day fully before life shifted to being safer at home. I feel like a blob. I ate quite nutritiously for the first few weeks and now I’m seeing behaviors where I’m eating out of boredom or stress. I’m grabbing sugar over healthy nutrients. I moved around tons for the first few weeks and now that behavior has taken a bad turn as well. I feel sickish a lot of the time due to these behaviors.

A – Allow the experience to be there, just as it is.

Nothing is being fixed or avoided. Emotions and sensations are allowed to just be. Fear shows up here often.

Me: Yep, I’ve had the fear, I’ve had the tears. Mostly anger. A lot of disappointment. There’s worry and anxiety. Allowing is a good term for this part of the process because I can’t fix any of it if I tried. I am in a frozen state of numbness where I’m allowing and waiting.

I – Investigate with interest and care.

This may show up as what you are experiencing in your body or beliefs. Is my stomach in knots? Does my heart feel heavy? Has my breathing changed? What thoughts or beliefs match where my body gives its attention?

Me: I feel exhausted with all the nothing. There are times I let out the heaviest and longest sigh I have. My legs feel heavy. I wonder if I have weights attached to them as I climb the stairs. The mad, sad, bad feeling is over my heart. My stomach feels icky.

N – Nurture with self-compassion.

What do I need? How can I give myself the space to show myself understanding, comfort, and self-compassion?

Me: Based on what I’ve written, it appears that my heart, solar plexus, and root chakras are out of whack. These areas have corresponding body parts that are causing me grief and crying out for help. I can do some targeted yoga to support those areas and myself. I feel much better on days I can get for a walk outside and have some time in nature. Exercise nurtures me a lot. Sometimes physically putting up my hand and verbally saying “stop” is useful when negative self-talks takes hold. To me, nurturing is the most important part because nothing changes if I do nothing with what I’ve recognized, allowed, and investigated.

The first three really identify what’s going on. The last part makes sure I nurture, tend to, and take care of myself. I’ve heard the nurturing step is often not completed because people don’t know what to do. Someone I know suggested that if you don’t know how to do the last step, think about how someone else you know would do it. Choose someone you view as wise and compassionate. Visualize what they would do and then apply it to your situation.

Other ideas that work for me are one or more of the following:

  • Drink some water. Hydration is a good way to reset.
  • Walk around a bit. Keep blood and oxygen moving. Stretch. Kettlebell work usually does the trick, but kettlebells aren’t always handy.
  • Oxygen flow is again the focus. Take full, long, slow inhales and exhales. Breathwork is the simplest fix to support physical and emotional changes. It can improve mood and is thought to boost immunity.

As you know, I’m all about finding a way. Walking myself through the four parts of RAIN is one way to support myself, guide myself, and work with my feelings so I can lessen the crazy and emphasize something more grounded. Crazy is too hard to maintain. Grounding offers something calmer and more stable. I don’t know about you, but I could use calmness and stability during times where there are no solid reference points and prolonged times of uncertainty and unknowns.

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.

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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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.