Heavy Breathing

I have a friend who works as an administrator in health care. She often shares with me aspects of wellness activities that are part of her work. Recently, she told me there had been many long days at the hospital due to all the planning that goes into protecting staff and patients from COVID-19 while ensuring the hospital and other facilities still operate effectively and safely. It’s a very demanding job, yet she describes it as also being a highly supportive work environment. She has shared with me creative challenge questions they are given each week. One week each person needed to share a sound that made them feel productive. She said it made people more mindful of the sounds in their environment all week long. A little extra mindfulness can make an enormous difference these days. My friend chose the sound of cutting fabric. She is a talented quilter, so this sound made sense even though it wasn’t related to work.

She also shared she liked the sound of a three-hole punch. A three-hole punch fits into her world of many papers at work. As a teacher, I liked the three-hole punch, too, although I think this friend likes it more. I still have a three-hole punch but rarely use it. It has a definite sound of accomplishment. It’s the precursor to placing final papers in a binder. I love binders but they are pretty quiet office supplies.

What would I have chosen as a teacher? Would I have chosen the morning bell announcing it was time to officially start my day with my second graders? Maybe the ending bell was a better indicator of a day filled with work, learning, and productivity. A pencil sharpener evokes mixed feelings. Often it was used to give the illusion of working hard when hardly working was the more likely scenario. Other times it represented the definite hum of worker bees in the hive of learning.

None of those sounds fit my present life. I still like the sound of an electric pencil sharpener. A newly sharpened pencil makes a soft scratching sound as it scrawls across a sheet of paper. It’s hardly perceptible but it’s there. I don’t do tons of writing by hand. I gravitate towards pens over pencils when I do. Even now as I type away, the keyboard clicks in a rhythm of spurts. Words appear, but I’ve never equated the sound of typing as being especially productive. I’ve never paid any attention to it. I’m being mindful of it now but think of it more as a means to an end. It’s the finished piece that makes me feel productive and that has no sound. When I’m done, I’m just done.

My home is pretty quiet. TV or music provides background noise. I’m not producing either of those. I don’t cook a lot, so the cooking sounds of mixers, knives slicing on cutting boards, and timers going off aren’t sounds that work for me either. I like the sound when it’s quiet. Silence has never bothered me. Seldom is there ever truly no sound. The clock that hung in my grandma’s kitchen ticks away in mine. I can hear that from the rooms off my kitchen. I find it reassuring. Comforting. Constant. Centering.

I enjoy being in nature where I can listen to birds sing and leaves rustle on trees. I can hear the wild turkeys forage as they move slowly in a cluster. A strong wind is exhilarating if it isn’t pushing against me. I’m not making any of these sounds. I just take them in and let them fill my soul.

How am I productive? What do I really DO anymore?

I’m a professional patient. Most things during treatment are done to me, not by me. Sounds are not any result of great productivity on my end. I sit the majority of my time at office visits and treatments, only walking to get from one area to the next. The infusion machine beeps when there is a problem or my infusion is done. I hear the whoosh of my cold cap filling with the magic cold that I wear to save as much hair as possible. Occasionally, I’ll hear doors of other treatment bays slide open and parts of conversations between nurses and patients. So much for privacy. About the only productive contribution I make is pressing the call button. I do that often to alert the nurses when I need to start the next phase of the scalp cooling process or there is an air bubble in the infusion tubing and the machine is beeping rhythmically because it isn’t happy. I don’t do very much. I show up and I endure, no small feats, but I don’t turn cartwheels while I’m there.

Professional patients still want to feel productive. We are quiet; we are vocal. We float in and out of appointments and visits; we dig in our heels and don’t make things easy for anyone while trying to get what we need that makes us feel human and a wee bit healthier. We say we are fine; we tell it like it is. We are grateful; we resent some things. We are individuals; we are part of a cancer community. We keep using our voices to push for action and not awareness; we know the number of women and men who die every day from metastatic breast cancer hasn’t budged one bit. Are we productive? Yes and no. There are no distinctive sounds that make any of these behaviors and feelings stand out.

I exercise. That’s an area of my life where I take ownership. Even this has changed no thanks to the issues I’ve encountered on this treatment with hand and feet issues. I’m aware I keep coming back to this in quite a few of my posts or comments, but I tell you, it has hit me hard. I hurt to some degree pretty much all the time with this treatment. Gripping tools makes my hands hurt. Gardening and yard work took a hit this summer. My first attempt at raking this season didn’t bode well for all I have to rake. My opposable thumbs have been highly oppositional. My poor elbows are skinned due to using them to push up off the floor when doing yoga or getting out of bed because pushing off my hands is painful. I work hard at walking, but I never know where my edge is and when I will have done too much. I only had blisters on my feet once, until last week when one the size of dime developed on the top of my big toe. My point is that a lot of the physical work that made me feel like I was being productive has been sidelined. I can’t run right now. I can’t lift my kettlebells. Walking is at a slower pace.

But . . . I have found a way to exercise differently. My coach has been phenomenal. I ordered a weighted vest and can load it up to sixty pounds if I want. Twenty pounds is a good amount for me. I can wear it walking around the house. An extra twenty pounds makes a noticeable difference. I will load more when twenty pounds doesn’t make me work hard. I climb stairs wearing it. I do squats, forearm planks, modified pushups, and some yoga poses. Over and over again. My core gets a workout. That vest pushes me. It makes me sweat. I feel alive and decisive.

The vest gives me control and agency. Putting it on and doing hard work is my choice. I know there will be moments I wish I wasn’t wearing it because it makes the work I’m doing lots tougher. It makes me feel like I’ve accomplished something and like I’m winning for a few minutes of my day. The vest makes me feel strong and proud of myself. I know I’ve had a good workout after I’ve used it. Feeling strong and proud are powerful feelings. I can do hard things. Hard things that make me feel good. Hard things that I choose. I am productive.

How do I know?

It’s the heavy breathing.

Heavy breathing is my sound that makes me feel productive.

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.