Cancer and Faith

Cancer makes faith and religion harder for me. I’ve always questioned and still believed. I haven’t wavered on what I consider the big things and feel each of these main points is clear enough to stand on their own. I am firm on these aspects of my faith:

• There is a God (or universal being, higher source, energy).

• God is love and God loves all of us.

• Religion is not God.

• Faith and religion are not the same thing.

• I am a spiritual being having a human experience in a body.

• Our purpose is to be happy and to help one another.

• Heaven is real.

How does cancer muddle faith and religion?

  • Many of these reasons overlap one another. Many people live by believing God has a plan, a plan for them, and that cancer must be part of His plan. Buying into suffering and cancer as God’s plan contradicts my belief that God is love. God doesn’t want me or anyone to suffer. He doesn’t want misery and unhappiness. Cancer isn’t good. It isn’t a blessing. It isn’t part of a plan or grand design. It steals, destroys, and kills. Cancer isn’t God or part of a plan.
  • People beat cancer because God is on their side. Ooooh, this boils my blood. This implies those who die from metastatic cancer are somehow Godless. They didn’t pray hard enough. Their faith or belief wasn’t strong enough. No, no, and no. I pray. I have faith. Would this waver when cancer recurs or returns as metastatic disease? What did they do wrong? Nothing.
  • People can pray away cancer. Nope. Here’s one that overlaps with God being on someone’s side. Prayer is powerful. Miracles happen. People pray and still pass. God didn’t need one more angel. When people say they pray for me, I have to wonder what specifically is in their prayer. Is it that I don’t suffer? Is it I have more time? Is it that effective treatments are matched to me so I have a complete response? Is it for a miracle? Some of these prayers can contradict one another. I don’t want anyone’s prayers unless they align with my prayers and goals for health and life. Maybe it’s just something some people say and they don’t follow through with the prayer part.
  • People with cancer must have done something wrong and have gravely sinned. Honestly, I don’t hear this one too often because of the company I keep, yet I know there are groups of people out there who believe such nonsense. They aren’t my people and I believe there is something fundamentally wrong with their belief system if this is something they believe.

How can God exist and cause such suffering and pain?

I wish I knew.

A good friend and I have an ongoing discussion on the existence of God and why bad things happen to people and in the world. She questions a lot more than I do and has become agnostic over the years through watching her father pass from a long slow decline after a stroke and other health issues, and seeing her mother hidden inside a body ravaged from Alzheimer’s disease. She knows what I’ve gone through losing my parents. She’s been there for me as I live with metastatic cancer. Events in the world eat at her belief like a parasite. There is too much suffering for her to believe God exists. She looks to me and I confess I have a tough time refuting her arguments. I don’t think I’ve helped her, and I struggle not to have my own beliefs erode.

What can I say? How can I reconcile God’s existence and why bad things happen?

The internet hasn’t helped me at all. Lots of Bible verses surface. If someone already questions belief in God, these are hardly helpful. I keep a journal of quotes from many sources that support my beliefs. Bible verses are included in these. I tend to use broader examples from everyday life and the world. Furthermore, not everyone is Christian, and there are many other good fits for someone looking for the right home for their beliefs. Attaching a label to your beliefs doesn’t do much for me anyway. I’m more of an action-based gal.

My belief is not up for debate. I know where I stand with God. I believe. My prayer life is good.

Cancer doesn’t even need to be the problem, the plague, or the evil applied to my reasoning. Replace cancer with COVID. Use the January 6th riots on the Capitol, the violence, and the attempted coup on the US government as your lens. Take terrorism, racism, poverty, homelessness, domestic abuse, destruction of the environment, lack of mental health resources, drug abuse, natural disasters, or something else when thinking about why bad things happen. Does saying God has a plan work here? How about God being on someone’s side (the wrong side) when these bad things happen? Did people get what they deserved due to some grave sin? Of course not. It doesn’t hold up.

Somehow saying God has a plan when someone is diagnosed with cancer or dies from cancer is supposed to comfort people. It’s the exception to the above scenarios. It’s unsettling, uncomforting, and not an exception.

I’m going to keep something incredibly complex as simple I can.

Bad things happen because

• of others’ actions (free will).

• of our own actions (free will).

• of natural disasters (nature).

• of imperfect science (imperfect bodies / science).

• of unknowns (unexplained).

The unexplained is where GOD comes in. Some things are not for us to know. Why do we think we must understand everything? We are only humans and God is divine. This is where it gets a little sticky because it’s the central question. GOD is an unexplainable entity. We use words like crimes, tragedies, disasters, and accidents to explain horrible events.

Good things happen because

• of others’ actions (free will).

• of our own actions (free will).

• of nature (nature).

• of science (research / science).

• of unknowns (unexplained).

The unexplained is where GOD comes in. Some things are not for us to know. Why do we think we must understand everything? We are only humans and God is divine. We use words like miracles, blessings, gifts, and destiny to explain wonderful events.

The reasons are the same. Our language and perceptions change. Our language is the construct. Faith isn’t based on facts or language. Belief is the real deal.

How do you explain love? How do you explain a soul? Why did we develop brains that allow us to feel compassion, sadness, and joy? How do you explain consistencies across time and cultures throughout history and present day that all have similarities in worship and a higher being? Yes, I have lots of questions and I believe.

We are here having a human experience – we are more than our bodies. That’s what it means to BELIEVE.

God comes down to belief.

Thank you for reading.

Falling Sky

When the sky falls

It falls directly above me

Chunks of space left above me

An empty howling nothing that shouldn’t be there

An empty howling nothing

Pulling and waiting

Fissures fracture across the blue like fault lines on the ground

Foreshadowing where the next piece may fall

Sky falls when you hear the words

You have cancer

Lots of sky falls

Scans confirm it’s already metastatic

Another piece plummets

So much information

Type, subtype, hormone receptor, Her2Neu

Each a piece of forever lost sky

Cancer words hurl pieces of sky

To the ground in a show of gravity and force

Grades, mutations, invasive, lobular, ductal

More pieces

Stages

Chemotherapy

Lymph nodes

Trials

Genetics

Genomics

Treatments

Survival benefit

Bigger pieces fall

You barely notice because

Of the doom that distracts while closing in

Like a dark night of your soul

Metastatic

This piece hits like bricks

You’re never the same

Everything changes

Forever scarred

Inside and out

So many deaths

Each their own portion of fallen sky

Grandma, Mom, Pete, Jim, Becky, Susie,

Bobby, Karen, Marge, Kim, Lalay, Lindsay,

Meghan, Melissa, Heather, and so many others

Whose names do you remember?

Speak and give them voice

Irreplaceable sky fallen with each

Loss through death touches our souls forever

Like a shadow that never leaves

Or a coldness in the yellow warmth of sun

So many scans

Tiny tubes of skyless holes

Confining, enclosing, lifeless

Sky falls waiting for results

Slingshots take aim at clouds

We ourselves knock out chunks before we hear

News of regression, stability, or progression

Pieces of blue get patched and repaired with good news

And then fall again in bigger chunks with bad news

until they can’t be put back

Some things can’t be put back

Including the fallen sky

That won’t see sunrise or sunset again

Skies fall in countless ways

Some spoken and some silent

Skies drop cruelly with metastatic cancer

Piece by piece

Chunk by chunk

Section by section

Assaulting, assailing, and attacking

Erasing, eroding, and emptying more and more

Stealing, silencing, and stilling before our eyes

A persisting and prevailing powerlessness causing pain

For more than just the haver

Cancer kills

Murders

Slays

Massacres

Cancer carnage concealed in common language

Of either succumbing or statistics

What’s being done?

Where’s the urgency?

Why can’t it be solved?

When will all be saved?

How will we get there?

What’s being done is our voices

Speaking and shouting

More and more

We will be seen

And not silenced

More research slowly unfolds

More action and faces

More is needed

The urgency is the estimated 43,600 breast cancer deaths

For 2021 in the US

119 a day

Up 3 from last year

The answer is more resources and research

More advocacy, attention, and connections

Better treatments, more trials, more collaboration

Growing bigger one life at a time

I don’t know when all will be saved

I hope, I cry, I push, I pray

I keep going

I still don’t know

No one does

I don’t know how

But believe one day

Cancer will fall and be no more

Just like those pieces of falling sky

The sky has always been one of my favorite things

The endless blues

The different hues

The starry nights

The paint of sunrises and sunsets

The clouds floating freely wherever the wind takes them.

Still moments and morphing shapes change before our eyes

My home is still under its dome

Hope is in the sky

Let’s keep our eyes steady on the hope

Of today and all our tomorrows

And not those pieces of sky that fall

They will sadly keep falling

And I will look up to find

Handfuls of hope

Patches of blue

Where I can

Above

Hope and Nature

2021 got off to a rocky start for the United States when a riotous mob stormed the Capitol in an attempted coup. This happened on the cusp of all 2020 gave the world. A friend of mine shared how she went for a walk to walk off feelings of despair she felt in the wake of recent events. Beauty surrounded her. She explained that she came across smiling strangers who offered greetings, children laughing and sledding, and sunshine breaking through the clouds. Walking often clears the mind and changes perspective. My friend returned home feeling better, reminded that lessons from nature make us stronger.

Wow. I decided I needed to head out to the nearby arboretum myself the next day and look for signs of hope in nature. I was not disappointed. Signs of hope were plentiful in my surroundings. Several inches of snow covered the ground. Tracks from small animals, skis, and walkers left trails to be followed. I see hope in snow because it assures me winter is how winter should be. It is a time for parts of nature to rest. Thousands of trees surrounded me. Some trees had rough bark with lots of texture, others were smooth. I always feel protected among so many trees. I know they are still alive in winter and just conserving energy. Their continued cycle of life is hopeful. I heard geese as they flew overhead. Signs of life were all around, and where there is life there is hope.

I even saw signs of spring. Literal signs near one of the entrances. Spring is perhaps the season filled with the most hope through births, blossoms, and the return of animals that have migrated. It will be months before these return but spring will come.

The people I encountered were friendly. It’s always what I find there. Waves, smiles, lots of good mornings. When I see images of people in the news who are hateful, dangerous, and destructive, I’m filled with despair. Spending time outside is good for me. It’s fresh air. I’m moving. I’m away from the TV and the news. Having interactions with humans who are polite and seem positive are meaningful to me even if they are brief. Hope in humanity is restored in small doses.

Of all the things I noticed around me, a slow realization began to build.

The greatest signs of hope I found were within myself.

  • I was in charge of my day doing exactly what I wanted.
  • I had control. I felt agency. All decisions and actions were entirely mine.
  • I could feel my heart beating inside my chest. I could hear myself breathe. I was fully alive.
  • I wasn’t just walking. I was briskly walking. My stride felt like I could break into a run or I could lift off and fly. What the heck was going on with me? Times when I feel well will never be taken for granted.
  • Moments in the now are filled with hope.
  • I thought I could walk for hours. My energy was boundless that week which I welcomed like a warm fire on a cold night. I liked seeing what I could achieve on a week when I felt like me. I capped my walk at an hour because I occasionally do more than I should, and I wanted my feeling of success to stay with me. Success breeds more hope.
  • I felt strong.
  • I felt my spirit.
  • I felt my will.
  • I felt healthy.
  • I felt at home.
  • I felt gratitude.

I felt all of these on a grand scale. Each gave me hope. Treatment resumed last week for me, and I carried hope with me. Hope is a necessity living with metastatic cancer that at times wears thin. Some days I run on fumes. Regular boosts are as essential as chemotherapy. The side effects from hope are a lot better, too. Those are all listed above. Nature provides hope every time. I look to the sky, clouds, sunshine, snow, and even rain. It’s in the trees, flowers, and wildlife. I feel it in the breeze. It is there in the stillness. Look, listen, and feel for it.

Hope is within each of us. It’s our nature.

The Christmas Tree and Light


Many thousands of years ago, there were people who believed that evergreens were magical. In winter, evergreens stayed strong and green when all the other trees and greenery turned brown and bare. People saw evergreens as a symbol of life and as a sure sign that spring would return. Candles were used out of necessity but were also symbolic of the light of spring triumphing over winter’s darkness.

Legend has it that the tradition of the first Christmas tree started with Martin Luther in Germany. He was a monk and church reformer who lived in Germany from 1483 to 1546. The story goes that as Luther returned home one wintry night, he saw the stars twinkle through the tree branches. Luther was amazed by the sight and eager to tell his family about it. To help them understand, he went to the woods and cut down a small fir tree. Luther brought it indoors and decorated it with candles that represented the stars he had seen.

The custom spread through Germany and then throughout the world. The Christmas tree first appeared in England when Queen Victoria married Prince Albert, who was German. In 1841, he set up a Christmas tree at Windsor Castle to remind him of his homeland. Immigrants from England and Germany brought the Christmas tree tradition to the United States in the 1800s.

The Christmas tree with its boughs stretched toward heaven reminds us that Christ brought people everlasting life. The candles or lights on the tree remind us that Jesus is the light of the world.

I celebrate Christmas, so I take this opportunity to wish a very merry Christmas to those who also celebrate it. Christmas is very much about light. There are other celebrations this time of year that also celebrate light. Hanukkah is known as the Festival of Lights. For eight nights, Jewish families light a candle on the menorah to represent the miracle of oil lasting for eight days and nights when there was only enough for one after the Maccabees reclaimed Jerusalem from Syria. Diwali is a five day festival of lights celebrated by Hindus and Sikhs across the world. New beginnings, good over evil, and light over darkness are celebrated. The Winter Solstice is the start of the solar year and celebrates light and the rebirth of the sun. Children of all ages may relate to the light on Rudolph’s shiny red nose illuminating the night sky. Some might even say it glows.

All these examples share the magnificent outpouring of light. All light is love and hope. When we celebrate any of these special days, we’re ultimately demonstrating what we have in common with one another. We’re celebrating light, love, and hope. Light overpowers the dark. Our differences do not define us. Our similarities should bring us together.

I wish you all much peace in whatever way you praise light and goodness.

Note: The Christmas Tree and Light first posted on December 23rd, 2018.

The Wishing Tree

We all love a good wish. We wish on stars and recite time honored rhymes while doing so to make it extra official. We throw pennies in fountains and down wishing wells. Every year we blow out birthday candles as we make a wish. We wish people a happy birthday and send our best wishes in cards and correspondences. We wish people good luck. Leprechauns and genies grant us three wishes. So I hear – I have yet to encounter any. The wishbone is greatly sought after a Thanksgiving Day meal. People wish on eyelashes, a full moon, acorns, falling leaves, and feathers. The wishing culture is alive and well. I’d like to think this is because we are hopeful rather than dissatisfied.

We also wish on trees.

The Riley Wishing Tree is a phenomenon that popped up along the Military Ridge State Trail. Area middle schoolers started it as an art project in the middle of summer and it’s still going strong. Hundreds have anonymously posted their wishes on an enormous cottonwood tree to be shared and read. A plastic box filled with tags and markers is kept on a round table near the tree. The tree provides hope, inspiration, and a sense of community. It is a beautiful and powerful image to behold.

I headed out to the wishing tree with my friend Kristin on an afternoon late in October. We’ve biked on this trail before and enjoy the farms, woods, wetlands, and prairies provided for scenery. Our sole destination for this visit was to take in all the wishing tree had to offer. Discovering new ways to enjoy an old activity is delightful. We drove separately, parked close by, and approached the tree on foot. Future bike rides will evoke memories of the wishing tree long after the wishes have been removed. Maybe one of us wished for more rides.

The wishing tags are remarkably waterproof. I had suspected that over time the wishes would be blurred from rain and time out in the elements. The legibility of wishes has held up over time. I find it unexplainable. I’ve always been one to think unbelievable things are possible. Just maybe this wishing tree was magical.

What types of things did people wish for? There were lots of wishes for good health. Cures for cancer, a vaccine for COVID-19, and healthy children were repeat wishes. Wishes for peace and a better world circled the tree multiple times. Many wished for people to give trees the attention that is given to screens and computers. There were wishes to carry on Ruth Bader Ginsberg’s legacy, equality, Black Lives Matter, and the outcome of the presidential election. It appeared the tree had distinct political leanings, but it’s more likely that the tree gets visited by those who want to make the world a better place. I didn’t see one single wish for more greed and fear in the world.

Kristin and I began reading some wishes aloud. It was another way to honor the wishes. One woman wished her husband would have more compassion for other people. We both wanted to know the backstory for that wish. One tag simply stated the writer would someday marry Amanda. That’s darn romantic. I hope long into the future the couple tells their grandchildren about the time Grandpa wished on a tree to marry Grandma. Wishes penned in children’s writing hoped for pets. One wished for no allergies so the writer could have a dog. Some kids wished for fun bike rides. All were moments in time captured by individuals meant to project into the future. There was something sacred about reading wish after wish. It was a moving experience that left me feeling more connected to nature and humanity.

To put hopes and dreams out in public is empowering. Wishing can help us identify what our hearts are yearning after. Wishing can help motivate us and lead us to take action. Wishing can be the first step in making it so.

Prior to arriving at the tree, I decided I would phrase my wishes as intentions. Phrasing an intention with “I AM” where I already have what I’m seeking would give that intention more energy than a wish. Already having something is more powerful than wanting, needing, hoping, dreaming, and wishing. Yet, reading all the wishes in the presence of this magnificent tree seemed to give them extra power. I wrote some thoughts expressed as intentions and some as wishes. It’s good to cover all bases.

Wishing is universal. Folktales have themes of wishing carefully. Some are cautionary tales that we need to be careful what we wish for or not to wish foolishly. A few have even been written about wishing trees. Many cultures have traditions involving wishing. Another friend shared with me that the wishing tree reminded her of traditional wishing kiosks at temples in Japan where wishes are made at the start of a new year.

I have lots of wishes. You could probably guess a few of them and be right. I will actively work to turn those I have any control over into real life realities. Wishes with actionable steps transform wishes into achieved goals. Maybe they were goals in the first place. Seeds of ideas take root somewhere just like a seed did that grew into the wishing tree.

Wishes are tender expressions of our hearts. We wish for love and kindness. We wish the best for ourselves and wish others the best. I know people who hug trees. I am one such person. To me, the wishes hug this special tree like a person could. Our invisible arms are wrapped around it and one another. We hold ourselves up as we hold up one another. And we keep wishing.

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.

Letter to God

Dear God,

It’s dark.

A silhouette of trees outlines my yard. A wet glare reflects off the street from last night’s rain. Houses sleep. Even the birds are still silent. I am up before the sun today and that never happens.

It’s dark in other ways, too.

I am wide awake and talking to you. Asking questions. Listening. Waiting for your answers.

I considered grabbing my blue colored legal pad and writing my letter on paper. The sensation of a gel pen and the flow of cursive writing has a calmness and beauty to it. I would fold the paper into thirds, address an envelope with only your name on the front, stick a few stamps on it, and mail it. Internet research suggests letters addressed to God are routed to Jerusalem, Israel. I don’t really know where it would go. I still may do it.

Just because.

It’s quiet. I like it being just the two of us.

As you know, morning Mass has been suspended for a few weeks now and will continue indefinitely. It’s too large of a gathering. Social distancing must be followed. I am grateful for the protection. I am more than okay not being there because I know you are with me when I’m not in a brick and mortar church. We walk together. It’s odd though with Easter approaching. It’s a big day for Christians. Strange move on your end.

I don’t get it.

I understood long ago that I don’t get to know the answers to many of my questions. A ginormous WHY persists. Why has any of this, all of this, happened?

As a human race, have too many of us lost focus on what’s important? Are we not listening? Why are some people ignoring social distancing, continuing to travel for pleasure, and perpetuating the false notion that the coronavirus is just like the flu or that they’ll be okay because they are young and healthy? What is wrong with these people?

I feel like there’s a me versus them mentality and we need to all be working together to slow the spread and flatten the curve. We are only as strong as our weakest link. There are some remarkably weak links out there. It’s a blessing I can’t be near them to let them know my feelings about their choices.

Or is there no reason for these events?

Is the reason just because?

My heart hurts. Life needs to sing again.

Ah, I’m hearing a few birds greeting the morning. I love that sound. Thank you for bringing me back to a simple joy. It’s getting lighter by the minute.

I question why the COVID-19 pandemic has happened the same way I question deaths from natural disasters, genocides, terrorism, and wars. Are these all just because?

I question why we couldn’t have acted sooner. Young people are dying, health professionals, the elderly, and people with underlying health conditions – like cancer. People across the country are learning the hard way the definition of asymptomatic. The young, the privileged, and the entitled are learning this pandemic isn’t only targeting groups that have been labeled as expendable. We all are seeing how the resources we have are overwhelmed and that we were ill prepared.

I question the hoarding. I question political responses.

I don’t get it. It’s a repeating refrain.

Maybe I’m not supposed to understand. I know there are many answers that are there just beyond my reach.

I do not question the goodness of our medical workers. You have created a group of heroes including doctors, nurses, pharmacists, and first responders that are dedicated to the point of exhaustion to support us. There are factory workers, grocery store workers, truckers, and farmers who are keeping us fed.

I do not question there will be an end to what is happening now. It just won’t be soon. There are still hard days ahead. Help us get through them.

Give us the science that will save lives. Give us needed equipment and gear to keep us safe. Give us leaders capable of understanding that people’s lives matter more than money. Give us hope. Give us wisdom. Give us love.

Hope comes in small doses these days. Signs of spring are appearing. My rhubarb sprouted up in my garden last week. Friends and family support me. I miss my people. New groceries each week or so keep me hopeful and nourished. I love getting outdoors to breathe in the fresh air and feel the sunshine. Music is a source of hope. Moving and sticking to my training schedule gives me hope for the future. Staying home and feeling safe is immensely hopeful as it is a solid action that can make a positive difference. Hope comes in the form of prayer. In the form of letters.

Help us give one another more hope.

Give us the warm sunshine that fills us inside.

Well, God, it’s time to wrap up my letter and move on to breakfast. I’m not sure what kind of closing is appropriate because I’ve never written to you before. More traditional prayers get an Amen. You pop in and out more informally throughout my day. My letter is somewhere in between.

Time will show what miracles we see and the lessons we learn.

I’ll keep looking for signs and answers as I always do. I’ll keep questioning and listening for answers. I’ll keep hoping and being thankful. I’ll keep doing my best to find a way.

Always.

Yours truly,

Me

End of a Decade

 

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Image credit: pixabay.com

December not only ends another year but it will finish a decade.

2020 is days away.

What has made history since 2010?

A lot. The world is a big place and I will leave out many events. My perspective is primarily through the lens of someone living in the United States. There have been cataclysmic forces of nature that ended lives. Gun violence has become common and largely ignored. I’ve included advancements in technology that have changed our lives for better or worse. Many events happened that aren’t mentioned here. The following is a mere sampling.

The decade got off to a horrific start. Haiti was devastated by a magnitude 7.0 earthquake on January 12, 2010. It left more than 316,000 dead or missing, over 300,000 injured, and over 1.3 million homeless.

The first iPad came out in April of 2010.

On April 29, 2011, over 22 million viewers watched Prince William marry Kate Middleton.

Many viral challenges came and went in the past decade. The Ice Bucket Challenge raised over $115 million for ALS awareness and research during the summer of 2014.

The world argued over whether a dress was black and blue or white and gold in 2015.

Apple also released racially diverse emojis in 2015.

The Supreme Court ruled that gay marriage was legal on June 26, 2015.

The largest single-day demonstration in U.S. history took place on January 20, 2017, to support gender equality, civil rights, and other issues that affect women. It was called the Women’s March and drew over 5 million people in over 600 marches across the world. Reportedly, around 500,000 people were in attendance at the Washington March.

On September 20, 2017, Hurricane Maria struck Puerto Rico. The Category 5 hurricane caused a major humanitarian crisis to Puerto Rico’s 3.4 million residents.

A total solar eclipse was visible across the U.S. in August of 2017. Another one won’t be visible until 2024.

The most diverse class of lawmakers in history was sworn into Congress in January of 2019.

Astronomers captured the first image of a black hole on April 10, 2019.

Donald J. Trump became the 3rd U.S. president to be impeached on December 18, 2019.

What has the last decade been like for me personally?

I sold my condo and moved into a beautiful home in 2010.

I planned to become an adoptive parent. Cancer had other plans.

I was diagnosed with metastatic breast cancer in the spring of 2012.

My mother died from MBC in April of 2013.

I taught for the first six years of the decade which I found blissful, purposeful, and frustrating. I went on medical leave from my job in the fall of 2016 and officially retired from a teaching career in June of 2018.

I started this blog on August 25, 2018.

Cancer sucks and it has consumed far too much of the decade and taken far too much of me. But I’m still here.

It’s easy to say fuck cancer and that the last decade sucked. I do say it. Things often undeniably suck in a very fuckful fuckable fuckety way.

A Triple F if you will.

It’s harder to embrace all the goodness and joy that abounds when you are living with a deadly disease. Amazingly, I have felt profound joy and happiness when I have been filled with feelings of love and something divine out in nature. I have basked in the warmth of time spent with dear friends. I have been inspired by encouragement and support from my family, friends, and strangers. I have been filled with prolonged moments of peace.

This decade has been harder for me than I ever could have known. I will move forward into 2020 with the intention to continue living in love, hope, and light.

What advances have there been for treating cancer over the last ten years?

I became overwhelmed trying to sort through information. Many drugs that have been approved for one kind of cancer have also been effective in treating a different kind. There are different approval dates based on different indications. Some drugs work well in conjunction with one another but didn’t start out that way. Some drugs have different FDA approval dates based on changes in dosing. Fulvestrant is one of these – it’s been around a long time but receiving a high dose (fulvestrant HD) when first receiving this drug makes an old drug better. This change has been approved within the past couple of years. New combinations are being tested in trials every day. I can’t do justice to all the approved breast cancer drugs in one post. I encourage those interested in learning more to visit the National Cancer Institute and Food and Drug Administration to conduct your own searches.

As I nosed around on FDA.gov, it looked like there have been over 20 approved drugs for treating cancers in 2019 alone. I don’t know how many of these are applicable to specific breast cancer or metastatic breast cancer settings. It was part of my feeling overwhelmed.

Back to the last decade and the development of drugs to treat breast cancer.

I begin with these caveats:

  • Information provided is true to the best of my knowledge.
  • The first known FDA approval date is given unless otherwise noted.
  • Drug names are listed first followed by brand names.
  • Keep in mind, this is not a complete list.

Just for fun, here are a few drugs from the 90s that are still widely used today:

  • anastrolzole/Arimidex  1995
  • letrozole/Femara  1997
  • trastuzumab/Herceptin  1998
  • capecitabine/Xeloda  1998
  • exemestane/Aromasin  1999

Early 2000s:

  • fulvestrant/Faslodex  2002
  • lapatinib/Tykerb  2007
  • everolimus/Afinitor  2009 (2012 for MBC)

And finally, here is a snapshot of what the last decade has seen in FDA approved drugs for treating breast cancer:

  • eribulin/Halaven November 2010
  • capecitabine/Xeloda September 2013
  • gemcitabine/Gemzar (2004) with carboplatin  2015
  • palbociclib/IBRANCE  2015
  • neratinib July  2017
  • abemaciclib/Verzenio  September  2017
  • trastuzumab and pertuzumab December  2017
  • alpelisib/PIQRAY  May 24, 2019
  • trastuzumab deruxtecan / Enhertu is the newest drug available to treat metastatic breast cancer with FDA approval as of December 20, 2019. Read about this latest advancement here.

Tucatinib also is showing a lot of promise for those with metastatic breast cancer. From what I’ve read or heard, this is still in trial status. If my science friend Pauline is reading this and would like to drop some science on us, please comment below and share in language we understand and can take to our oncologists.

I started my cancer life on a regimen of doxorubicin /Adriamycin (approved in 1974) Cytoxan (approved in 1959) followed by paclitaxel /Taxol (approved in 1994).

No new drugs were approved between 1974 and 1994. How is that true?

As I look at the lists of drugs above it seems abundantly clear I would not still be here without the advancements of the last decade. So many targeted therapies have emerged and many more are in the future. Research is responsible for these advancements. I have been on many of the drugs listed above. I need more options that will specifically target mutated cancer cells in my body. I believe in research happening at UW Carbone.

My medical background is that of a patient. Gone are the days when I say I don’t have a medical background because I have had quite an education. I don’t have a degree, but I have a background. Unfortunately, the past decade has schooled me through first-hand experience. I bring that knowledge to the table and to each office visit. I plan to keep bringing it.

And I will find a way to bring it wherever I find myself in 2020.

Happy New Year.

The Star

I wrote this as a poem a lifetime ago in 1993 and added on more in 1995. Long gone is the reason why it happened over the course of two years, nonconsecutive at that. I suspect I started to hum it rather than recite it and it morphed into a song. More came to me as I hummed. It isn’t too surprising as I almost always have more to say.

No matter what you celebrate (or don’t) this time of year, I hope you believe in goodness and that you carry it in your heart to share with others. Spread the goodness.

The Star

Show me the star said the shepherd,

Show me the star in the sky.

Show me the star so I may go

Find where the new savior lies.

 

Show us the star in the east,

Said three wise men who were kings.

We’ll bring him gifts and he’ll bring to us

A life that is everlasting.

 

Show me the star shining brightly,

Up in the heavens above,

For all to find the new born king

And share with the world all his love.

 

Look for the star Christmas Eve,

Shining above all the earth,

Over a manger, a crib made with straw

To announce baby Jesus’s birth.

 

Show us the star said all people,

Wherever we look every day.

Wherever we go, whomever we meet

To spread the message of Christmas Day.

 

To spread the goodness of Christmas Day.

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Image credit: pixabay. com

Santa Claus

The Santa of my childhood was magical and momentary. He was as real as his red suit. He never failed to deliver the presents on my list. Life was simpler. So much simpler.

Life is more complicated as a grown-up. It’s filled with more responsibilities, problems to solve, and expected etiquette. I sort through which responsibilities are mine to own and which are not. I do the same with problems. I still get stuck with problems that aren’t mine. Much etiquette seems outdated and that helps me ignore what I choose. I am in favor of doing what I want whether Miss Manners approves or not. Sorry, Miss Manners, that wasn’t very polite of me.

This includes seeing Santa Claus even though I am thought to be too old. I never set out with the intention to see him. In my defense, I didn’t even know he was going to be where I was shopping that day. When I found him, he was still the same as from my childhood. No, not the same. The older I become, the better he gets.

I found myself out on a cold, wet, windy day to a garden center and home decor gift store mainly because I wanted to enjoy the atmosphere of all the different themed Christmas trees they decorate. Meandering aimlessly around the store relaxes me. I pick out a favorite each year. This year it was one of the nature themed trees as it usually is with me. They all have appeal. The red and gold themed trees were festive. Red velvety ribbon wound its way around trees as garland. Assorted traditional bauble ornaments decorated others. Candy canes and gingerbread styled ornaments hung on branches of another. Wintry poinsettias interspersed with silver and gold ornaments bedazzled another with a sparkling star that glimmered on top. Even a silver tinsel tree looked beautiful adorned with shiny ornaments in blues and purples.

In the back of the store sat Santa and Mrs. Claus side by side on an iron patio bench, surrounded by a variety of smaller pre-lit trees that were undecorated. Both looked simply so happy, warm, and kind. Their eyes sparkled with happiness, warmth, and kindness. They looked like they stepped out of the pages of a children’s book.

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They looked how I feel when I take freshly baked cookies out of the oven. Or when all is well and I’m lost in thought gazing into the fire in my fireplace on a cold night. Or when I’m looking at the ornaments on my tree at home and remembering happy memories that each one evokes of family, friends, vacations, and favorite things that make me feel happy inside.

I passed them by on my first walk through the store. I am an adult. I don’t see Santa.

Except for last year when a similar opportunity presented itself when I was out of town in Milwaukee on a holiday outing.

No, this wasn’t going to become a thing. I walked slowly, marveling at how jolly and permanently smiley they both were. They were the epitome of what the Clauses should be because that’s who they were. A handful of store employees crowded around them and exclaimed an obligatory “Merry Christmas” in unison to have a group photo taken. I kept walking.

I walked more around the store, admired more trees, holiday decorative pillows, birdhouses, and strolled through the plant area with long tables of large poinsettias in addition to their usual plants and bulbs.

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I was in no hurry to head out into the wintry day of ick that couldn’t make up its mind whether it wanted to stick with rain or try to snow.

Perhaps somewhat intentionally, I ambled back in front of Santa.

No kids were waiting.

Okay, so this apparently has become a thing. Clearly.

I could have worse things than being compelled to see Santa.

Santa wanted me to sit on his knee. Of course he did. He’s Santa. Last year, I said I was too heavy. He insisted. And feeling like I was about five years old, I hunched my shoulders, bowed my head, and mumbled, “Okay, Santa.” A person does whatever Santa says and does not argue with him.

This year I was not argumentative but respectfully declined. Several photos were taken. I should be good for another year.

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Why do I need to do this? I’ve come up with two reasons.

One simple reason is I crave a return to an easier time in my life. Being a child again would give me a world where my parents were alive and well, a world where I could have a great time at school and come home and play, and a world where Santa always came through and brought me exactly what I asked for. It would give me a world where I didn’t know anyone who had died and I had never heard the word cancer. My sheltered world was pretty wonderful.

I have a desperate need to recapture this bliss from my childhood even if it’s only for a minute. It feels incredibly warm and filling. Don’t knock it until you’ve tried it.

What’s my second reason?

Santa represents hope, belief, and goodness.

Hope, belief, and goodness are a few of the best things around. Each of us wants to possess those qualities and give them freely. We all want to hope for the best, believe in miracles, and share the good. We want these in abundance. Santa has them and we want to be like Santa.

Is this harder for me to do as someone living with cancer? Some days are harder than others, but we all have hard days. Some days I don’t think much has changed and other days I don’t recognize my life. I don’t see the hospital where I go several times a month for treatment as a hopeful environment. It’s sterile and problematic. I feel like I’m in a strange version of the movie Groundhog Day each time I’m there. I wonder what loser is going to ding my car with their door in the parking ramp and what repetitive hurdle I’m going to encounter again in a conversation about which insurance needs to be billed first, what I like to be called, or an important detail about my health that I feel isn’t being addressed. My 40s have not been how I envisioned them. How is this my life? Why did this happen? Like I said, some days are hard.

Other days it doesn’t seem hard at all. I wake up and feel energetic and excited about my day. I focus on doing what I can to be kind. Our world needs helpers and I can still be a helper without many of the restraints that dictated past actions. Thoughts wondering what others think or what lines I need to remain within in the professional world are gone. I can color outside the lines! And it’s good! Many things are easier to accomplish without rules getting in the way. Some days I just have fun planned and I relish in my fun because I deserve every ounce I can get.

Back to Santa representing hope, belief, and goodness and how it applies to my life. I have a lot of hope in research for new metastatic breast cancer treatments. I have hopes for many arboretum walks, meeting new physical goals, special trips, and fun times with friends. I believe I make a difference. I believe in education. I believe in democracy. I believe in God and science. There is a lot of goodness in the world. Santa spreads some of that goodness.

I believe in Santa.