Homestretch

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

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

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I’m looking older but hopefully wiser.

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

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

That changed.

Alicia died in early April.

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

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

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

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

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

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

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

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

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

And so, I’ll ask.

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

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

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

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

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

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

I will find a way to celebrate.

Always.

Making A Run For It

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.

Uh-oh.

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.

You’re 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. 

It grows. 

Dammit.

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.

No way.

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.

Watch me.

 

April 16, 2020 update: The Race for Research has been canceled. It will return on June 5, 2021. Onward to Plan B for me.

Big Steps

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.