Trust Suckers and Trust Blowers

A person can be either a Trust Sucker or a Trust Blower.

A Trust Sucker functions exactly how you would expect. Trust is sucked right out of you over time. Maybe it’s through belittling, embarrassment, manipulation, non-shared values as to what is public vs. private information, or repeated poor judgment. It feels like air is being pumped out of your lungs and you are left gasping for breath. The sucker sucks because of what he or she needs, not because of what you are doing or not doing. My theory is trust suckers feel very alone and are unhappy with the success, independence, closeness, or whatever it is that someone else has that they do not.

Trust Blowers are the polar opposites of the suckers. Just as you feel emotionally spent after being with a sucker but may not realize exactly why, you feel differently after being in the company of a blower. Blowers send supportive, positive, and uplifting energy your way. Inhaling is easy. They truly want what is best for you. There is an overwhelming feeling of safety with blowers. They are easy to trust because you know a confidence will stay confidential.

I need to dwell with the blowers as someone living with metastatic breast cancer. It’s about not spending essential energy on people or situations that don’t serve my best health. It’s about taking care of myself and not trying to fix someone else. It’s about feeling loved and trusting myself. I don’t have the energy to waste on someone I can’t trust.

I am extremely cautious about whom I trust in my personal life. As I age, I’ve gotten better at reading people and being able to discern whether to trust a person or not. In general, I use the following as guidelines to help make decisions:

  1. Does the person share private information about others when it isn’t their place to share? Someone who talks a lot about others is likely blabbing about me.
  2. Does the person remember what I’ve shared or take an interest in my life? Or are this person’s actions usually self-serving? Why does it matter? Self-serving people will not care when they break a trust because they lack compassion and empathy. They will not think they did anything wrong and that you are the one making too big of deal of things.
  3. Is the person a giver or a taker? Givers have others’ interests at heart. Takers take and move on to the next opportunity.

Cancer has messed with my ability to trust. Before I was diagnosed, I trusted I would remain healthy and be able to work until a normal retirement age. I trusted annual mammograms and results from ultrasounds. When I went on leave, I trusted that the long-term disability company that my school district contracted with was looking out for my best interest. I now feel the goal of this company was to get me on social security disability income so they wouldn’t have to pay as much. I’ve trusted scan results and later received information that contradicted those facts. Facts aren’t up to interpretation.

There are days where I don’t even trust myself.

I’ve struggled trusting medical information. Sometimes I want to scream at the medical world just as I often did with education. There have been times where I’ve felt like a problem or a difficult patient, rather than a fellow human being. I only have minimum access to information posted regarding test results and I feel like information is being hidden from me when I ask for more. It’s my body and I have right to know. I didn’t lie in a scanner for two hours because it was fun. I do better with more information but it is a balance as too much overwhelms me. Then there have been times where I have felt I was not liked. It’s hard to entrust your care to someone when you feel that someone doesn’t care.

One recent instant surrounds a recent cancer medication I took. I had been told it was important to take it consistently in the morning at around the same time for best results. This is true for most medication. However, this apparently didn’t hold true on treatment days because it was more important to make sure labs were all good. It would be okay to take said drug in the afternoon on those days. I had to keep a patient diary to provide data for a study I was involved with on when I took it, what dose, and its side effects. I took the diary seriously. Months later I was told that no one cared when I took the med by the nurse who collected the data. Even while I stared at this person in disbelief, I told myself I would take it in the mornings even on treatment days if no one cared.

I cared.

I still have diaries that haven’t been collected because I am not on that drug any longer and I no longer have contact with this nurse. How important could this data be? What was entered in its place? Was anything entered? I also still have a one to two month supply of this drug that I was supposed to return when I moved off the study. I haven’t been asked to do so since this nurse hasn’t come knocking for it.

Guess who doesn’t care now?

I’m not going out of my way to return any of it. Chalk it up to medical protocols and schedules in the life of COVID. There are more important things our health professionals need to deal with other than my patient diary and unused pills. Yet, I can’t help but question developments in my patient experience when scenarios like this unfold over time. Details deemed important one day were discarded the next. The inconsistency still surprises me.

Trust matters in a patient doctor relationship. I try hard to trust my oncologist, other doctors, and nurses. I do most of the time. I am not the same patient I was at the start of my metastatic cancer diagnosis. I will speak up. I will ask questions. I will disagree. I will persist and ask again if a question goes unanswered. This may not be a matter of distrust as much as needing information so I understand.

I am part of the team.

I expect to walk together.

I won’t follow blindly.

Trust is built over time and is a strong foundation for solid relationships. I will always look for the blowers rather than the suckers in my life whether it’s personally or medically. Whenever there is uncertainty, and there is plenty of uncertainty, I want people I trust with me so we can walk together.

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.

Black Lives Matter

Quotes for the next couple of months will focus on Black Lives Matter. Think a metastatic breast cancer blog isn’t the right platform? Think again.

The mortality rate for Black women diagnosed with breast cancer is 42% higher than the comparable rate for White women.

Black Lives Matter.

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.

Engage Fear

Eleanor Roosevelt once said, “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. . . You must do the thing you think you cannot do.”

What is the thing I think I cannot do? It was ages ago when I first came across this quote. I was still teaching and I thought it might mean teaching again in the same capacity as years past. The shipped has sailed on that option. I am not in the classroom, but I still can teach in other ways.

A multitude of things exist that I think I cannot do. It used to be bike rides. I have enjoyed some long bike rides for the past few years. I returned to a favorite bluff that proved too much for me one day and hiked it to prove to myself I could do it. Taking a vacation by myself is another example. I planned a trip to Alabama in February of last year. It was a glorious experience in discovery and independence.

If I did nothing when faced with things I think I cannot do and stayed in fear, then I would be immobilized. Doing nothing is no way to live.

All of my choices matter so much more now. Treatment choices have results. They always have, but bumpier roads have an effect on how I interpret those results. Some things can’t be undone as easily as choices and decisions from my younger years. Like a deer frozen in the headlights, fear keeps me from moving and making decisions.

Everyone must get past fear. When I don’t care about consequences, I believe that I just may be able to do everything I want in terms of living. I feel much more like the old me. Over the past year, I’ve done things I didn’t know I had in me. I spearheaded a yearlong fundraiser for metastatic breast cancer research. It has renewed my spirits and stoked a fire within me. I put some plans into motion at the beginning of this year because I moved past fear. I planned a vacation to Sedona with a good friend. We booked the trip. COVID-19 kept us home as it did for many.

Engaging fear is like golfing in a lightning storm. No one wants to get struck by lightning. Lightning destroys, starts fires, and kills. All these are scary things. But not golfing is also frightening when it’s the only path to a better everything. Golfing in a storm metaphorically may be the only choice.

My odds of being hit by lightning are 1 in 700,000. I had a 1 in 8 chance of getting breast cancer. Odds aside, I engage with my fears.

Our fears are not there to scare us. They show us what is important.

Teaching is important to me and I will teach through my writing and my actions. We all teach one another through our actions. Blogging allows me to use my voice. It is important to me to ask scary questions and advocate for myself at oncology appointments because knowledge is better than not knowing. I need to understand as much as I can.

Engaging fear makes fear less fearful. I never thought I would connect engaging fear with negating fear. I resolve to move forward one fear at a time. Doing this is a true testament to strength, courage, and confidence.

How does the fear engaging process work? Associated thoughts a person has about a fear need to change with the actions caused by them. Feelings then change as a result. For example, I am somewhat afraid of severe weather. Tornado warnings as a child in the middle of the night involved uncomfortable basement conditions, flashlights when the electricity went out, and the battery powered radio. There were no weather radios, nor had the age of technology hit where you could track storms on your own and know if a bad storm was in your path and its approximate time of arrival. There were no cell phones or constant internet access. We didn’t even have a telephone in the basement. Yet, there was a sound rule: If the siren was heard or the TV had the tornado warning symbol, down went the family into the basement. It was a good rule.

Nowadays I am on my own. My thoughts associated with severe weather have changed, and therefore so have my actions. I have a weather radio. It is programmed to sound the alarm for tornado warnings. Storms wake me up anyway. There have been numerous occasions where I have trekked downstairs with my iPad and iPhone (along with shoes, jacket, car keys, etc.) in hand to watch TV for a bit when the light on the weather radio hasn’t flashed because that’s what I needed to do to feel safe. There’s a defining distinction – I felt safer rather than fearful.

Facing a fear always makes the fear lose power. I have a good plan for severe weather. The threat of a destructive storm or tornado is real and out of my control. My response to the danger is within my control. I am pretty calm about these types of storms now and luckily have never been in anything so devastating as to be a major life event.

My anxieties, on the other hand, have damaged me over the years. Anxiety is all about perceived danger. Perceived, not real. The worry I’ve created internally and externally about losing aspects of my life due to potential turns in my health has not been healthy. It doesn’t resonate with my usual mindset. The stress response that goes with anxiety is unwelcome. Changing the associated thoughts and actions I have toward these anxieties is key. I do much better when I outwardly talk back to my fears and anxieties and tell them to GO AWAY, followed by a sentence of what I AM going to do rather than what the fear or anxiety is going to do.

Another good example of engaging fear is centered on the vacation I had planned to Sedona. Due to COVID-19, the trip was quickly unbooked. I have a big underlying health condition. I engaged with my fear. I made pro and con lists. My friend who was going with me works in health care. We talked through the situation over a pizza and decided together we couldn’t do it. The whole thing was canceled right then and there. Sad? Yes. But I felt an overwhelming wave of relief because it was the right decision. By the next weekend, recommendations were being made not to travel anywhere. I am unbelievably happy that I wrestled with my feelings and did what I knew I had to do to stay safe.

I have made enormous strides in engaging fear. I still have fears. I think I always will because I plan to keep growing and new unknowns will continue to surface. I am up against some scary unknowns these days. I feel like I’ve lost. Lost the ability to choose. Lost control. Lost my voice. Lost some trust. Lost again. Losses and potential losses increase my fears. I’ve been engaging with fear multiple times daily. Life is giving me more ways to lose. I feel, I engage, and I try to move through it. I’m having a hard time. I am waiting for the fears I’m feeling to be negated. I am waiting for them to feel less powerful.

Well, I’m finishing this post in a different place than I planned. The hope I usually have is hiding. I’m golfing in that lightning storm and I don’t like it. I am wet, cold, and a bad golfer. But I’ll hold fiercely to my 9-iron and I’m prepared to whack anyone with it who gets in my way. Eleanor Roosevelt may not have thought very highly of this behavior. Oh, well. Engaging fear isn’t meant to be pretty.

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.