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.
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.
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.
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.
I am not a runner.
The only thing about me that runs is my nose as a side effect from treatment.
I hated running in high school. Every step of the yearly running test was agony. It made me feel like I wasn’t good enough because I never did well and always walked some.
At the end of 2019, I saw a comment from one of my friends who works at the UW Foundation who has been a main support to me as I’ve worked to raise more funds for metastatic breast cancer research. She had written a supportive comment on someone else’s post promoting a 5K race for UW Carbone.
The race is on May 30th.
My birthday is on May 30th. My 50th birthday.
Thoughts are faster than any runner. I knew in a flash what was happening. My thoughts are italicized.
Don’t even think about it.
You are not a runner.
Don’t be ridiculous.
You don’t enjoy running.
You can’t do this. You have metastatic breast cancer.
You have never run a 5K.
You haven’t even tried.
Because it’s insane.
But you’ve seen this information and you can’t un-see it.
The idea is already there that it would be an awesome way to greet your 50th birthday in victory. It sure would show cancer a thing or two.
It also would be a miracle, but you’re a lot stronger than you were last year.
You know what happens once an idea has already rooted.
You’ve envisioned crossing the finish line.
You’re apparently doing this. Keep it to yourself so others don’t think you’re unrealistic, too ambitious, or crazy.
What’s wrong with you?
I started doing some research on 5K training schedules. I learned most schedules intersperse running and walking and eventually phase out the walking. I would manage by building my abilities slowly.
On days that I didn’t strength train or walk outdoors, I worked on my running plan, slowly building endurance and running stamina and keeping the embers to do this burning inside me.
I also started working with a running coach. Get this – it turns out I already had a perfect gait from my gait analysis and good rhythmic breathing. Who knew?
I might be a runner.
My mind throws obstacles in my way. It’s really good at that. A sliver of doubt that sneaks in has more weight than all my positive affirmations, mantras, and visualizations. It shakes my goals. I struggled at home on my treadmill in extending my running minutes and lessening my walking recovery minutes. Breathing was harder to manage. The fun phase was over. I realized all the hard work that lay ahead.
Ah-ha! I knew it wouldn’t last. It would be best to give up and enjoy something easier.
No, it wouldn’t. Stick with this and figure it out.
Be stubborn. Rely on that irrefutable strength. Being stubborn is more important than your physical capabilities right now.
I am in this for the long haul.
It’s time for another session with your running coach.
More physical obstacles showed themselves. I broke out in a rash fairly early on in my efforts training on my own that kept coming back every time I ran and got so hot. It was exercised induced. My body eventually accepted what I was doing to it.
Take that body. I won.
I officially registered for the Race for Research at the end of January and formed Team 50. My heart felt choosing Team Pokey for a name was a better fit, but I wanted to keep messaging consistent with messaging from other fundraising goals.
My running coach wrote out plans for me. I worked on interval training mixed with strength work. I would vary the speed and incline, hop off the treadmill and do some lifting drills that runners do, and then repeat for 5 times. I was amazed at what I could do.
I practiced progression runs of varying paces and runs with varying inclines. I could do them. It was a challenge, but I could do them. It made me feel accomplished and athletic. Feeling athletic in the midst of metastatic breast cancer is not me. Feeling athletic was never me.
Except athletic has become me over the span of six months.
Okay, semi-athletic. Keep it real.
I worked on treadmill progressive runs, inclined runs, surge runs, and made it outdoors a couple of times. I was hitting a 5K fairly easily on my treadmill. Then COVID-19 hit. One by one, my plans disappeared. The Race for Research is the last event standing and I suspect it will either become a virtual run or be rescheduled for fall. Gathering cancer survivors, those being treated for cancer, as well as their supporters together at a crowded event, even if it’s outside, doesn’t align with physical distancing. The UW Carbone Cancer Center will make the choice it needs to make.
It will be a major disappointment, albeit necessary.
It is a miracle I’ve even endeavored to run. I experienced hand-foot syndrome several years back which made walking extremely painful. Neuropathy has been present at some level since my original chemotherapy. I ignore it. I’ve worked really hard to get to where I am.
If COVID-19 sidelines the race, it will not sideline me. I have mapped out a 5K loop in my neighborhood and will run it on my birthday. I’ll invite a few friends to come cheer me on at various points along my route (all six feet apart – more like six blocks apart). COVID-19 will not take it away from me. It may take away my VIP status and prevent me from speaking at the race about the deep hope I have for research at UW Carbone, but it won’t take away what I’ve been working for, sweating for, and fighting for since December. It can’t take away the hope I am always striving to give others.
If you know me, you know I will find a way to get this to happen and make the best of it.
I’d love to say I’ll do it rain or shine, but if it’s rainy I’ll postpone my moment in the sun for a time when it truly will be a moment in the sun. I’m stubborn but not completely crazy.
I have been unknowingly making a run for it for many years.
I have been a runner all that time.
I won’t stop running.
I am a runner.
April 16, 2020 update: The Race for Research has been canceled. It will return on June 5, 2021. Onward to Plan B for me.
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.