My 3rd port is the charm.
Attempt #1 didn’t get very far because a port couldn’t be installed again on my right side. My surgeon tried several times but the needed vein on that side had narrowed too much for a catheter to be inserted.
Attempt #2 was that same day. I was handed over to a different surgeon and went through surgery number 2. A port was successfully installed on the left side. I felt quite energetic after both of these.
However, it didn’t work. Somehow it flipped medially and was facing my sternum. The veins in my arms took a beating for a couple months. It took a long time, too long, to get the next attempt scheduled.
Attempt #3 was successful. A larger port was installed about a month after attempts one and two. It’s staying in its pocket and not going anywhere. I can feel the bumps in my chest used as a guide to center the access needle. It was easy to access and is working as expected. This one is a keeper.
The whole experience reminds me of the movie Groundhog Day. I don’t remember how Bill Murray broke the cycle, but I hope I finally have. In one version my pre-op and post-op rooms were different rooms on the 4th floor of the hospital. This last (and final) time I had a private room with a view of the capitol on the 10th floor. I had the same surgeon for the last two – the same anesthesiologist for all three. Each surgery version seemed slightly different before I dozed off. I got a bit closer to what I needed each time.
This all took about two months. From an emotional level, it was exhausting. Having any surgery would do that, but to keep having the same surgery over and over is annoying. Thank goodness it was minor.
If you missed the port drama and would like to read more, you can do that here.
May my days ahead and yours be easier.
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.
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.
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.
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.
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.
This is a tale of taking steps.
Step One: Failure and Recovery
It starts last September in a training session where my fitness coach was gathering baseline data to use for setting goals.
She wanted me to step up on a medium sized step up box without any help from my hands, other equipment, walls, etc. It was hard for me.
I can step up on a small step up box 12 inches high successfully without support.
The medium box is 18 inches high. I can do it if I am holding something for support. This means I am using leg muscles and relying on arm muscles for help. What counts in this setting is to not use arm muscles. My hamstrings, quads, glutes, and core need to do all the work.
I knew it wasn’t going to go well and I didn’t want to do it. My coach was there to hold on to me if I needed it. She’s great but I didn’t find her stabilizing. I fell backward, stumbled, but was able to right myself so I didn’t fall.
It was scary. There were tears. I moved to another part of my workout. We focused on all the things I was really good at. I don’t do well with fear or failure and couldn’t shake the voices in my head. Casting away those negative voices is also hard for me. It bugged me that I had trouble with the box because I knew I could do it. At home stepping up and down from a kitchen chair I had moved into a corner was part of my workout because it mimicked climbing hills and making big steps I climbed on hikes. I hold on to the top of the chair while I practice which is cheating, but it works for me.
Since I couldn’t get rid of the voices, I moved the medium box to a corner and did it confidently without issues, without hesitation, without fear. I felt a little better. It shut up the voices and I salvaged what I could.
Step Two: Approximated Movements and Muscle Building
Some time ago I bought a TRX suspension trainer to use at home. Entire workouts can be built around it. I love using it because it works so many different muscles and fits whatever level of difficulty I need. I can do pull-ups, push-ups, squats, lunges, stretches, and modified yoga moves. Working with it makes my body feel quite good.
I hang on to the TRX when I’m practicing with the medium box at my weekly training session.
I have worked to isolate movements in my hips, glutes, and legs.
I climb my staircase at home with exaggerated movements pretending my regular steps are jumbo-sized.
I have turned on my abs repeatedly.
I have exhausted myself and felt like I wasn’t making any progress at all.
Step Three: Success
Muscle memory is mysterious yet strong.
Something happened at the end of November.
I felt like I wasn’t making any discernible progress. There was a minuscule lift of maybe an inch when I would try to push off from the ground with my foot. I didn’t have the needed strength.
My trainer set the small box next to the medium box. I stepped onto the small box, then the medium box easily. I took one big step backward from the medium box to lower myself to the floor. Even doing that terrified me the first time because it felt like such a big step down. I modified (cheated) and held onto something to make sure one foot was securely on the ground before letting go and step down with the other foot. It was doable. I repeated this exercise several times not using my hands.
I tried stepping up from the ground straight to the medium sized box. No dice. I was unable to piece it together moving forward. My trainer gave me the TRX to use while I stepped up. As an educator, I’m all for modification and chunking smaller steps together. I get it. I know that’s what I’ve been practicing. I don’t get why I haven’t progressed faster.
It was time for something different. What was next? Did I want to do arm pulls or push-ups? Neither. I wanted to use the punching bag. I like hitting. Beating up something other than myself feels good. Hitting works. It helps me focus. Other feelings fall away.
More practice on the box was next. No one expected a surprise. I was to practice a skill in isolation and work on pushing off with one foot.
I knew I felt different as I walked to the box. Let’s blame it on adrenaline. An insane idea entered my mind when I was just a couple of steps from the box that I was going to go for it and I’d make it this time. In hindsight, I should have announced my plans in case my plans didn’t work out and I needed help. I still had on the boxing gloves and wouldn’t be able to grab anything easily if I fell.
The momentum was there. I stepped up, pushed off, used my core, glutes, and leg strength, and just like that, I stood on the box.
Yes, I did it. Triumph was mine.
I did it several more times, giddy and confused with my success.
Step Four: Real Life
A step up is defined as when there is an increase in size or amount. There have been noticeable improvements in my strength and stamina where my fitness is concerned. Right now, I feel I struggle a bit more because I’ve moved up a level.
Quite often I find I am not making many strides living with metastatic breast cancer. Every time I go to the hospital for treatment, I am faced with at least one aggravation, usually several ranging from long wait times, people who don’t know who I am, insurance or billing absurdities, and of course health hurdles. I will step up to each of these with as much tenacity as I can muster. Persistence and doggedness paid off in the classroom when digging in my heels with teaching children. I do it well and I’m getting lots of opportunities to showcase how stubborn I can be. My life away from treatment days when I can do things the way I want without restraints (aka the right way) goes much more smoothly.
There have been changes I’ve noticed in myself. I’ve stepped up in my confidence. I carry myself with more assurance and I see it in how I talk to others and what I’m willing to take on myself. I am bolder when I stand up for myself and say what I need when I’m at an office visit or treatment. I plan events that go well. Each successful event moves me closer to a greater goal.
The Rockettes practice hours a day to ensure everyone is in the right step at the right time for a performance. Marching bands do the same. The moon landing and the first steps on the moon didn’t just happen. It took many people working together and many small steps over time that added up to a giant leap for mankind. Medical advancements, breakthroughs, and treatments used today are the result of research, trials, and carefully planned steps that led to medical successes.
In what areas of life do you need to step up? Success takes time. Moving forward takes time. Whatever it is that challenges you, keep at it one step (up) at a time. Use a TRX suspension trainer or boxing gloves if you need a hand. Keep working.
“She’s done it all.”
I heard this comment a while back referring to a TV personality. She has written songs and books. She’s written a movie, starred in it, and directed one. She’s co-hosted two morning TV shows. She had a lasting marriage, is a mother, and seems to be loved by many friends. I don’t know her, yet I get the feeling she returns that love back to friends and strangers.
She is talented. I like her.
You may even correctly guess this person’s identity. I’m purposely not going to name her because that really isn’t the point. It could be many people. Those in the public eye often achieve a level of success and celebrity because they are so visible in the public eye. Opportunities and connections come to them like bees to honey. Opportunities and connections are wonderful, as are bees and honey. Nothing is wrong with any of those things.
What I want to write about is success.
How is success defined?
Does success mean doing it all?
It certainly can.
But I haven’t done most of the things this woman has done and I am still successful.
I have family and friends who love me and I love them back.
I established myself in a career I loved where I was respected and made a difference. I feel that overall I was liked and had a good reputation. I worked hard over many years to earn that respect and reputation.
I have traveled extensively including all 50 states and 26 countries.
I have a beautiful home.
I have interests that allow me to grow while still feeling whole.
I see beauty in people and places.
I even have a few books and songs. Unpublished for now. I’d love to see that change with the books. The world may be better off without the songs. Lucky ones have heard these.
Each individual has his or her own definition of success. For a long time, the most familiar model for success meant money and power in the business world. Success was measured with a dollar sign. You were more admired if you held immense power. Popularity was an important indicator of success. You knew you had made it in the world if everyone knew your name. It mattered who you knew and how well connected you were. Success was defined by money and possessions.
Of course, life isn’t this way for most people. I suppose the above description does match a definition of success for a few. The fictitious George Bailey in It’s A Wonderful Life beautifully demonstrates how someone who doesn’t fit the above description still embodies success. He’s even the richest man in town because he has qualities that matter more than money or power.
Success to me means being loved and feeling happy. I have both of those.
Success means being healthy. I would love not to have cancer. But I do. I am thankful for the health I do have. I can’t feel defeated or unsuccessful when I always try. Some things are out of my hands.
Health means a lot. Life changes when a person has lost their health, mobility, or independence due to an injury or illness. I now live with one of those pre-existing conditions. I’m on Medicare. I receive disability. I can’t take long trips like I once did because of a revolving door of medical appointments. When I do travel someplace, I pack a traveling pharmacy. I try to keep up but need to do less sometimes. A lot has changed. Many health dominoes have toppled over much earlier for me than I thought they would if they toppled at all. The thing with dominoes is that when one domino falls, others do, too. I took my relatively good health before cancer for granted. When a person has good health, they do have everything. I still have a lot, but life is different.
Feeling happy and healthy are the two forces that guide any feelings of success I have.
I am not “doing it all.” Having/Doing it all means different things to different people. It’s all relative to an individual. If I don’t have what someone else has does it mean I am lacking, or vice versa if the situation is reversed? My goals are to be as happy and as healthy as I can be. I still want to get up in the morning with the intention to somehow be helpful if possible and to live joyfully. I want to go to sleep at night with the satisfaction that I succeeded.
Take a moment and think of a time when you felt successful. What had you done? How did you feel?
I’ll give a few examples that may trigger some ideas.
One of my extracurricular activities in high school was forensics. I was a storyteller. Although I never came in first at a meet, I did place well enough to earn a trophy once. The trophy wasn’t all that important. I felt successful in retelling a story so well that I painted a picture with only my words and captured my audience. I also felt extremely successful that I never passed out during a telling. I had a wide range of standards to define success in those days.
I also am privileged to present a small scholarship to a graduating high school student who plans to major in education. It isn’t much, but it’s important for me to be able to give back. I feel successful that I can support someone’s dream in a small way. Still feeling connected to the educational community also makes me feel successful.
Reaching goals enable a person to feel successful. When I finish a hike or a bike ride I feel successful because I have completed something from start to finish. When I’m able to lift more weight or meet a new benchmark in my training sessions I feel successful because I know I have made progress. Goals can be small to still feel successful. I know someone who had a brief stay in the hospital and needed to move around more even though it was painful to walk far. She told me one of the nurses saw her making a slow lap around the halls on the floor. Afterward, the nurse came into her room and made three boxes on the whiteboard where general notes were written about diet, meds, and other plans. She checked off one box for one lap and told my friend she needed to do two more that day. My friend confided in me she really didn’t want to because walking hurt and she was so slow. But those empty boxes stared at her waiting to be crossed off. The boxes were such small things, but very motivating. She did what she had to do. She simply crossed them off without walking to make it look like she had done the work. No, she didn’t, but I wouldn’t have put it past her. She did two more laps, each one faster than the last. She was very pleased with herself. I was proud of her.
No money, fame, or power were in any of these examples. Success truly came from a place of happiness, being able to help, and being healthy enough to get something done.
As long as I can find a way to feel happy, helpful, and healthy, I will be successful.
I would love to hear your ideas and thoughts on how you define success.
Some choices are a lot easier to make than others. Choosing the length of a walk on a given day is an easy choice. Ordering a favorite meal at a restaurant is easy. Snuggling up with a good book is an easy choice. Sleeping in is a no brainer.
Other choices are harder. We all face tougher decisions about many things ranging from work, finances, home, relationships, marriage, parenting, and health to name a few.
Giving myself a chance is often the hardest. I can be my own worst critic. It’s easy to support others, and yet I doubt myself with the exact same task I am so confident others can achieve. Sometimes I perceive a physical drawback; other times it’s a mental obstacle of self-doubt, inner criticism, and negative self-talk. The mental obstacle always is present, causing me to question a physical choice. Just as I do physical strength training, I can strengthen my mind.
How do I maintain a strong mind?
I can’t do (insert difficult activity here). Well, what if I could? What would it look like? How would I get there? Why do I think so definitively that I can’t? When my fitness coach asks me for two or three more reps during a workout, I respond that I can do three more and I do. This wasn’t always the case. When I think of all of the reasons why I shouldn’t do something, I have to stop myself and come up with reasons why I should absolutely and unequivocally do it. It isn’t that I have to do something, but rather that I get to do something. Positive self-talk and compassion sends negative thoughts on their way.
If I don’t believe in myself, I’ve already greatly limited my chances to succeed. There are times when it feels like I am the only one believing in me. Being stubborn is usually a great strength of mine that I need to recognize and work to my advantage. I must tell myself that I can and reframe things in the affirmative.
Planning is a huge reason for many of my successes. I am a planner. When I have a plan, success is more likely. Plans used to always work for me. Then cancer threw a wrench into some of those plans and success took a lot more work. Success had to be redefined. I needed a lot more contingency plans and attention to so many details that at times all it seemed I did was planning and plans were never put in motion. Plans so often changed. Then I transitioned into a “plan and adjust phase” where I wouldn’t take it as an automatic failure if Plan A didn’t work out. I would adjust a bit and call Plan B a learning opportunity. I would just keep chipping away at whatever until I found a way to succeed. This still works well for me, although I often feel like I have to work a lot harder to pull off something physical than someone who looks like they’re achieving it effortlessly.
Looks like. I have no idea what effort someone may be making physically or mentally. It also rings true that others do not understand how hard I’m working. We are all the same that way.
As an aside, I would like to state that when my plans change, it isn’t something I want to happen. I want to keep plans, but can’t always make it work. Please don’t take it personally. I’m already too hard on myself when I have to cancel or turn something down in anticipation of side effects I know are coming. I’m working on finding more soft spaces within myself.
Breathing resets my body and gives my mind a reset as well. Maybe it’s just thirty seconds of good, deep, diaphragmatic belly breaths. It’s all I need to remind myself that I am the boss of me, that I am strong, and that I can do it. Meditation has proven health benefits in that it reduces stress, blood pressure, and has sleep benefits. Even a deep sigh with an extra long exhale can trigger the automatic nervous system from being over stimulated to being more balanced.
Music also helps me, whether I need something relaxing and classic, or I’m in the mood for more current hits. Do country roads take you home? Is it all rock and roll to you? Does Bach have your back? Fine, fine, I’ll stop (in the name of love). The point is to have music available that you love and that suits what you need. Music expresses emotions and works with parts of the brain in ways that words alone do not.
Movement resets both my mind and body. Sometimes I think exercise really does more for me emotionally than physically. Even though there is a chill in the air, the cold, fresh air makes me feel alive. Not too long ago, I took a walk in one of my favorite places on a very windy day. A slight mist became heavier. I didn’t care. In fact, I absolutely loved it and knew it was exactly where I needed to be. There’s also a correlation to walking faster which helps keep my heart happy. Although it sounds counterintuitive, moving around lessens fatigue. It may feel like the last thing I want to do. Exercise helps clear mental fog and I feel better overall when I’ve finished.
Having cancer compounds negative chatter all the more. It can step in instantly when something doesn’t work out and tries really hard to stop me. There is no room for that kind of chatter if I am to maintain my strong mind. And I am. I just need to keep giving myself the chance I know I deserve.
And so do you. We are all the same that way, too.