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.

Top Ten MBC Supports

While I was out walking the other day, I passed the home of a student I had taught a few years back. I’m still friendly with the student’s mother and she was out working in her yard. Our paths have crossed more over the last few months. We have some similar interests and both like supporting our community. On this particular day, she shared that a cousin out in New York City had been diagnosed with metastatic breast cancer. Active. Mid-thirties. A new mother. It’s unbelievably hard to process at any time in a person’s life, but I understood it was hitting her really hard during COVID-19 in a geographic area that has seen astronomically high numbers of cases and deaths from the virus. I am calling her Marcie which is not her real name.

I know what’s like to be going through active treatment during a pandemic in Wisconsin. My lens is what I experience and what I see through network news. I don’t know exactly what life is like for Marcie, but I empathize. I know far too well what it’s like to have life repeatedly turned upside down. My friend asked if there was anything I could share with her that she could pass on to someone newly diagnosed with stage iv breast cancer. We talked a bit longer and I said I would message her a couple of ideas.

I found I couldn’t limit it two or three tips as I thought about what to send. There are many things I’ve done over the years. Some pieces fit into my life better than others. Everyone has their own list of what works for them. I thought about what worked for me, what still works for me, and came up with a top ten list that I sent my friend. Marcie and I are now in communication. I share my list as today’s post.

Top Ten MBC Supports

  1. Take a health journal with you to appointments. Use it to note vitals, take notes, keep a list of questions, document side effects, file test results, etc. I am on my third binder. My notes helped me understand appointments better, remember them, and sometimes I needed them if my oncologist said something that I found contradicted something earlier. A health journal provides a source of accountability.
  2. Consider buying Radical Remission by Kelley Turner. This is the top book I’d recommend from all the cancer ones I have read. I heard she also has a podcast. I haven’t listened to the podcast. I am cheating a bit with this point because it contains much of the advice you would suspect to hear on nutrition, stress, and more. It examines 9 factors that long term survivors have in common.
  3. Belleruth Nepartsek has a guided imagery CD that I downloaded early on in my diagnosis. It was called “Fight Cancer.” I listened to a guided imagery segment and an affirmation segment daily. I am sure she has several guided imageries. The one I like involves a real or imagined place outdoors where you are surrounded by supporters that you know or may not know. It was often in the afternoon when I felt fatigued and I would fall asleep as I listened. I still listen to it every so often. I find it empowering.
  4. Comfort foods are good. When you feel sick, you need to eat what keeps the vomit demons at bay.
  5. Exercise as you are able. Even if you don’t feel like it. Try to do a little walking every day to keep moving. I wasn’t always good at this. Now, it is a priority every day.
  6. I found essential oils helped with anxiety and nausea. They are not to be ingested. Just inhale. Lavender, peppermint, and spearmint work well for anxiety and nausea.
  7. You may have to set boundaries with others on what you need and don’t need. It’s okay to say no thank you. Don’t feel pressure to accept invitations or share information just because someone asks insensitive, none of their business questions.
  8. Some people you may not know very well will rise up and sincerely support you. Let them in. Keep in mind those boundaries. Some people you’ve known for years, perhaps some family members and close friends, may disappear because they honestly can’t handle your situation. Let them go.
  9. Advocate for yourself. Ask questions. Be persistent. Be knowledgeable. These qualities make you an assertive and strong patient – not annoying or difficult. Look into your rights as a patient. Know your rights.
  10. Ignore statistics whenever possible. You are not a number. I was given literature to read before initial treatment even started. I could see it contained percentages on survival rates . . . and I threw it out unread.

Bonus Support

I forgot maybe one of the most important things I’ve internalized . . . DON’T GIVE UP. There is a lot of research happening on the metastatic breast cancer front. Ask about it. Research the research on your own. One of the best things I did was some special genetic testing through FOUNDATION ONE that identified some new mutations in cells. Mutations that can be targeted.

Don’t give up. Keep searching to find a way.

Always.

Fulvestrant and Frustration

Fulvestrant (also known as Faslodex) is a treatment for estrogen positive metastatic breast cancer. It is usually given in conjunction with another drug used to treat MBC. It is received monthly through two injections into the muscle of each hip.

One notorious side effect is muscle soreness at the injection site that can last for several days. I worried about this one a lot. What I had read online painted a painful picture. The first injection cycle was a piece of cake. I wondered what all the fuss was about. I was thankful to have dodged pain.

I found out what all the fuss was about the following month when I had the next set of injections. I was still new to receiving these shots and was waffling back and forth between a clinic and hospital setting. This set was given at the hospital. I didn’t take the weight off the side getting injected. No one reminded me. I was in pain immediately. Pain radiated from my hips all the way down my legs. I spoke up but don’t remember getting much of a response. I felt sore afterward for up to a week. I was sent on my way with no reminders for aftercare.

There was plenty of anxiety around the injections that followed. When my original oncologist left the clinic and I completely switched all of my care to the hospital, I had an excellent nurse who was an expert on administering fulvestrant. Unfortunately, she has since moved on. I remember I learned a lot when she trained someone one day I received my shots. These are the tips I learned:

Tip #1 Take all the weight off the leg on the side receiving the injection. I knew this from previous instructions.

Tip #2 Stay active. Try to keep moving on the day they are given. Walk before or after. I had already been told that walking seemed to help.

Tip #3 Massage the area after injecting for a minute. It helps move the drug. It makes the injection site less sore.

Tip #4 There were also stretches very similar to a pigeon pose in yoga to help open up the hip area. Again the goal was to prevent soreness the next day. I do these every time.

I must be forgetting some, which sure would explain why side effects have flared up. Please add any additional tips by responding at the end of the post.

The last time I received my injections, a different nurse was training another nurse.

No mention of the massage.

No mention of the stretches.

I had to take over with those instructions. It frustrated me that I had to do some of the teaching. I apologize I don’t remember the nurse who was leading the training. I had not seen her before and she was in and out in a flash. She didn’t know me. However, I felt a sense of responsibility to share tips on what was useful for the patient, the one receiving the injections, because the patient carries home with them whatever side effects result from the treatment that show up that evening or the next day and stick around a day or so. It seemed like that was news to them. I hope they carry what I shared forward to other patients like me. We are more than a stunning pair of hip muscle areas.

I know my outlook is somewhat affected by what I’m calling pandemic brain. This may be a separate post. Pandemic brain is kind of like chemo brain in that thinking is affected by what is happening. Living a quarantined life is getting to me. It’s been ten weeks  . . . and three days.  I’m touchy and easily irritated by fools who are living in a world where they are the only one who matters. Nurses are taking huge risks daily as they are in close contact with those in their care. I am not directing my displeasure at them. Like I said, I’m frustrated, and some of that frustration flows over when I feel like I have to do something I ought not have to do. In this case, that means offering what I feel is information that should be standard care when training someone how to administer fulvestrant. I got the feeling my guidance was received as annoying interference.

Too bad.

I will continue to be assertive (not annoying) where my body is concerned.

It’s true that nurses must train one another about how to administer the injections correctly. I don’t have a problem with that practice. I feel their primary focus is to make sure proper procedure is followed.  Minimizing patient discomfort at the time of the shots seems to be second. This is a part of following proper procedure in my mind. The two are very much connected. A far distant third seemed to be how I felt the next day or days after. It had an “out of sight – out of mind” vibe. All three matter like the sides of an equilateral triangle. Focus fully on training the nurse and administering the injection. Next, focus completely on the patient while receiving treatment. Finally, put all of the attention on aftercare so the patient continues to feel comfortable at home.

The last few times there has been more inflammation and soreness at the injection site. I am tired of my thighs and hips being inflamed and sore. I think a different area of my hip needs to be abused. I’m sorry, I meant used.

Side effects have lately made me feel medically battered. There is always something to manage. It has become routine and most of the time not a huge deal. I wait for times when I can experience my treatments and medications with zero negative effects. I feel like I’m asking for too much.

Am I?

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.

Face Fear

What I’ve learned about fear over and over again is that the anxious anticipation of something is always worse than the event itself. There have been conversations I have dreaded and events I was sure would result in my getting the short end of the stick. The events happened and life went on.

One of these events was returning to chemotherapy back in the summer of 2016. I wanted to avoid this option like I want to avoid a bad cold, negative people, and raw seafood. It was my second experience with chemo – an unwanted sequel to that of years earlier. Eribulin was the name of the chemotherapy drug to be used. It is a cell cycle specific drug that attacks something called the microtube structures within cells. These microtube structures help a cell divide and reproduce. Stopping the microtube structures from functioning results in cell death. Goodbye cancer cells. Normal cells grow back.

I was terrified of effects like I had had when I had chemo back in 2012. I threw up so much after the first infusion back then that I needed to go to the hospital for fluids. I contracted fungal pneumonia and the shingles a couple of months later that landed me in the hospital. I gained a lot of weight due to steroids to battle nausea. I was lethargic and my mind was in a fog for months after the treatments ended. I knew what going through chemo was like and it was something I really didn’t want to repeat.

But it was my best option.

The day came to receive the first dose of eribulin on July 26, 2016. No throwing up, no nausea, no lethargy, no weight gain. I lost my hair again and was without it for over three years because of this drug and the drugs that followed. That reality and my feelings associated with it were difficult to navigate again. Otherwise, I felt unbelievably good. I had energy and could focus on activities that I enjoyed.

The weirdest thing happened once I faced my fears of having chemotherapy again and started treatment. Without the fear, profound moments of immense peace, joy, and intention took hold of me. The depression I had struggled with lifted when I went off the oral chemo pills I had been taking. I wasn’t teaching at his point in time, but I didn’t feel depressed. In fact, eribulin was a new lease on life. Every day off work was a day closer to coming back. I didn’t realize at the time it was the end of my career. My feet didn’t hurt with every step. I could walk again. I could hike.

Fear is almost always worse than the event itself. The fear I held about doing more traditional treatment again was worse than the reality. The eribulin wasn’t difficult to receive or tolerate. It was pushed through a syringe over two to five minutes. I didn’t feel a debilitating loss of energy and almost no nausea. For the first couple of months, I found I actually had lots of energy and felt wonderfully healthy (aside from needing chemotherapy in the first place). Low white blood counts were an issue, but that was a common problem encountered with many cancer treatments.

There are new fears. It’s a repetitive cycle every time I start a new treatment. What side effects will I experience? Will this treatment work? Lots of “what ifs.”

I have a lot of fears of treatments not working.

Fears of not having options.

Fears of my team not caring enough.

Fears of getting worse and losing my independence.

Fears of lots of things that make me cry and those thoughts make me feel unsafe and very alone.

And then there are the fears that my lovely hairstyle will always look like I’ve electrocuted myself. It has calmed somewhat over time. That one makes me smile and brings me back to where things are okay. My curls remind me I have no control and the straight and narrow never was my path. I’m unruly like the clouds in the sky. My hair feels comforting.

I face fear every day as someone living with metastatic breast cancer. The fear of having MBC has become so commonplace that I know it’s there, but I try not to think about it and I give it the least amount of space possible if I have to think about it at all. I face it down and get on with my day. I face fear like I face the mirror in the morning. Some days it takes more work.

Every so often I sit with it. We talk. Mostly I feel. Then I’m done. Until it resurfaces.

Fear has been on my mind more than usual lately. There are more unknowns. My biggest fears revolve around cruel consequences if my treatment is affected because of COVID-19. These unknowns could severely impact my other unknowns. I’ve hunkered down as much as I can and it still might not be enough. I began this post writing that the anticipation of an event is worse than the event itself. This virus may be the one scenario where that isn’t true. I don’t know. It will continue to play out over time where one domino affects another, even if the dominoes at first seem unrelated. Facing fear does not mean to act willfully stupid. It doesn’t mean you roll the dice and take your chances. Facing fear means being informed and having a plan. Right now that plan involves choosing the most protective option in all my decisions. I will continue to face the fear in my life by making smart, well thought out decisions. I will be grateful in my belief I am staying safe. I must believe hope is more pwerful than fear. And it is.

My Most Protective Option

Choosing my most protective option has lately become a repeated refrain for me. I find myself comparing choices as I deal with a smaller world for myself and what I am able to do with limited options available to me.

In a school setting, teachers always followed the principle of providing the least restrictive environment for students with special needs. I came back to that idea time after time in work with special education teachers and instruction for students. I want the same type of tried and true standard for the circumstances I now find myself in as I shelter at home. The least restrictive environment would do nothing for me. Heck, the least restrictive environment would place me out and about without a mask in large crowds with strangers. What I needed was the exact opposite of the least restrictive environment. The most protective option fit perfectly. It fits every decision I’ve needed to make so far.

Medical

Being in the same room with my oncologist is preferred. I have been open to visits over the phone and video style because it mainly seems I have little choice. I could hopefully see her if I needed some type of physical interaction. If I’m choosing the most protective option, I must go with a remote visit. I may feel differently after a few months. Telephone and video have limitations. Eventually, the most protective option may be to see her in person as it may yield results that you can’t get without contact. Meeting face to face could eventually be more protective as circumstances vary.

My treatments have continued as scheduled. An army of gatekeepers and temperature takers await me at the uncrowded hospital entrance. Hallways are unnaturally empty. No one waits in waiting rooms and people are sent to their treatment bays immediately. I wait there alone. The nursing staff is cheerful even though they wear masks and protective face shields. I was not happy with the answers I received about how many days (yes, days) they were asked to wear the same surgical mask before getting a new one. That is most definitely not the most protective option for them even with a face shield. Protecting myself involves that those I have contact with are also protected. I do not want to be overly critical. I do want everyone to stay safe. I’ll follow up with a few more questions at my next visit.

Groceries

Getting groceries has evolved into quite a process. March 13th is the date I started social distancing and staying at home. Wisconsin’s Safer at Home order took effect on March 25th.  I could still shop during the first hour of business assigned as a courtesy time for the elderly and those with underlying conditions if that was my only option. It would still put me in a public setting. My other options are delivery or curbside pickup. I haven’t been able to nab a delivery time. Instead, I focus on getting a curbside pickup timeslot every two weeks. Slots open up online one week in advance at midnight. They are gone within minutes. I am sleeping and hopefully lost to my dreams at midnight, except when I need to reserve a grocery time. One night after I reserved a spot, I noticed all the available times were gone within ten minutes. It has gotten even more competitive since then. Last week they vanished within three minutes. Three! I am not sure exactly how many are offered each day, but the demand is much higher than the supply. I am thankful I got one and that for now I have figured out what I need to do in order to get what I need. Things change quickly. I just learned the window opens up at 1 PM rather than midnight. Time will tell if that switch makes ordering even more competitive.

I admit it also makes me sad that grocery shopping strikes me as a cut-throat world. My oncologist advised me to take this route as a way to keep myself and others I may come in contact with (like her) healthy. This is something I can do for me and for her. I feel some guilt in taking a spot that is in such high demand. I can stretch items and plan menus so I am more than comfortable shopping every two weeks rather than shop every week. At the same time, I need this service as much as someone else, so I must do what keeps me safest. It’s my most protective option. I will choose it every time.

Reserving a time involves multiple steps. Getting the groceries into my home adds several more. Items come out of boxes (cereal, protein bars, yogurt) so I don’t need to bring boxes into my home. Plastic items get wiped down with Clorox. Blueberries, blackberries, and other small fruit are taken out of their plastic containers and put into glass containers. I dunk foods in soapy water and rinse them. There is a sanitized and not sanitized half of my counter as I unload items. My groceries have never been cleaner. It’s exhausting and insane. Right now, it’s what I do thanks to a viral YouTube video.

Hair

When my hair grew back in 2013, I was done with coloring it. It could be natural. I was firm about it. I had to staunchly defend my choice to one or two who couldn’t understand it even though it had nothing to do with them. There’s always a critic. My hair was beautiful. A silver curl framed my face in a striking spiral. When it grew back in 2019, it was a lot grayer than before. I felt so old and felt I looked washed out. My wig was a much younger look and I liked what it did for me. I chose to get on board with coloring again and that was that. I certainly never thought a situation would unfold that would prevent me from getting my hair done. I have hair. I have quite a lot of hair. It is ironic that I can’t get it done or go anywhere. Who knows where I’ll be on the cancer road when stay at home lifestyles finally are no longer necessary.

I took matters into my own hands and colored my hair on my own. I ordered some that was free of parabens, sulfates, phthalates, and ammonia. It didn’t sound like it was too hard. The directions were straight forward enough. The company had videos to watch. What could go wrong? The only places I go are to my oncology appointments and to pick up my grocery order. No one sees me so now was as good of a time as ever to try something new. Chalk it up to a massive need to feel in control, but there is a bit more to it. I wanted to feel good about my appearance. Perhaps that sounds vain. Having hair that looks decent goes a long way for this metastatic breast cancer patient who wore a wig for three years. I want to keep my hair and I want it to look good, even if no one sees me. I see me.

Inconveniences vs. Problems

Rabbi Steve Leder appeared on TODAY with Hoda & Jenna earlier in April. He offered excellent advice on perspective and encouraged people to distinguish between inconveniences and problems. Not being able to go to a restaurant is an inconvenience. Having bad hair truly is an inconvenience. It sucks but it doesn’t make it less true. Not being able to breathe and needing a ventilator is a problem. Not having any food or a means of getting food is a problem. I need to remind myself that what I am experiencing personally through this so far have been inconveniences. I may shed a few tears as a way to deal with my feelings, but my issues remain identified as inconveniences, not problems. You can listen to the brief interview here.

Choosing my most protective options will continue to guide me in the days ahead. It offers a solid way for me to evaluate choices and make consistent decisions. It removes my feelings and provides me an objective format. Hopefully, it will make tougher decisions much easier because the safe choice is usually an obvious choice.

It won’t help me figure out if I should bake chocolate chip cookies or brownies. This isn’t an inconvenience or problem. Neither option is more protective than the other. Perhaps my litmus test doesn’t hold up in this situation.

Luckily, I know what I must do.