Accepting Help

Help!

Help me if you can, I’m feeling down

And I do appreciate you bein’ round

Help me get my feet back on the ground

Won’t you please, please help me, help me

Help!

The Beatles

I need help.

I am at a cancer crossroads. Either I continue on as I am, in worsening pain. I’m managing though pain pills here and here. Last month I scarcely needed any of this. Or I can pursue a different path. A path where help is available. One where I’m not on my own. This would be the path of Agrace.

Agrace has loads of palliative support. I have not contacted them yet.

I need help getting up and down from a seating position.

I need help with food preparation. I need help eating.

I need help cleaning. I have a person for this.

I need help finding a in home massage therapist. Why, I’d sign-up with Agrace for this benefit alone. Right now I go for a massage twice a week.

I wobble. It takes me a few moments to stabilize when I stand. Then I bumble around a bit. My legs have buckled twice. I don’t want this when I’m on the stairs. I don’t want it anywhere.

Now I find I get winded walking in from the parking lot. I need a handicapped parking pass. The paperwork has been filled out. It will make my life easier. It will also take some getting used to that I need one. Today I requested a wheelchair for my PET exam. I was already breathing hard and I knew I had quite a distance to cover to get to the machines.

I need help writing this blog.

Accepting help is hard for me. I’ve always been on my own and fiercely independent.

I think of former students who were helpers. They loved helping others. Others loved being helped. As a child, I was one of these helpers. I was an adult too. But I don’t like being helped present day. What changed? Cancer. Cancer changes everything. Receiving help somehow it makes me feel lesser. Help right now makes me feel sick. But I need it to feel better.

When do I have time? This week is packed with medical appointments. There is no time to connect with Agrace. It will have to be a December thing.

A good friend reminded me of what Mr. Rogers said recently.

“When I was a boy and I would see scary things in the news,” Rogers said to his television neighbors, “my mother would say to me, ‘Look for the helpers. You will always find people who are helping. ‘”

Fred Rogers

I have become one of those who need help. I hope I can still find ways to give it. We all need help from time to time. Another good friend says it’s time for me to accept payback for all the help I’ve given. We’ll see how it goes.

Is accepting help easy for you or not? Why or why not?

A Day in the ER

Last week I spent time in the ER.

It sucked.

For the past several weeks, my belly and back have hurt. Each day was worse than the day before. It was an increasing ache that left me crumpled crying on my hotel bed after my sister’s wedding reception and I had called it a night. I had grown a beer belly in a mater of days. My panties didn’t fit due to my new figure. Because of this, I couldn’t get up out of a chair or bed. I felt super beautiful.

My oncologist thought I was constipated. Separate issue. I feel I’m sharing too much.

So, I showed up to my office visit and let the tears flow as I shared I wasn’t feeling well. She finally believed I was filling up with fluid. She pulled my treatment because she thought the cancer was spreading. I disagree and don’t have enough information to make an informed decision.

She would try to schedule a PET followed by a paracentesis as soon as possible. The next morning, I checked and was shocked to see the PET was nine days away. I couldn’t wait that long. The pain was intense now! I called the triage line to see if I could someone get things moving. Was it feasible to go to the ER and get it done there? Yes, it was.

Off I went.

I was quickly roomed thanks to a childhood friend who still lived in the area and recognized my name. That was the only thing that happened quickly. The ER is slow. It is loud with undecipherable noise. Two black men lay unconscious on gurneys outside the individual rooms. I spied one patient in a room bandaged from head to toe. Kind of seemed like I was well off compared to these patients.

My ER doctor came in and scolded me with the reminder that the ER is used for emergent needs and not therapeutic needs. She’s right. I wasn’t getting my therapeutic needs met in a timely manner. I was even told by triage to go there. In my mind, my therapeutic needs had turned emergent. In the future, I will try to go through proper channels of radiology to meet my needs.

About two hours later my paracentesis was underway. A quick ultrasound was done to find the pocket that was most open to drain liquid. A needle headed with lidocaine was inserted into my lower left side abdomen. Then a larger needle with a tube was attached and the sucking started to remove the ascites build-up.

I told you it sucked. Cancer always does.

3.65 L of a yellow fluid later I was done. My stomach was flatter. I felt better. I went home after another two hour wait. Plenty tired, I rested. By evening, I was feeling glum. Why do I need to be served everything on the cancer smorgasbord? When will this happen again? What does it mean from a cancer perspective?

I wish I could find an easier way.

Stories of Cancer Objects

I’ve been at this cancer thing for quite a while now. These are the objects that tie me to cancer and treatment without question.

Port:

My port tells the story of ease and comfort for treatments. It’s used to get blood draws for labs. Premeds and any injections take this route into my body. Chemotherapies, infusions, and whatever else my body needs go in through the port. Mine has been a companion for years and started to not work. A protein flap builds up over it and prevents a blood return. Fluids still go in but a blood return is needed for it to be labeled fully functional and meet criteria for being used for treatment. Alteplase is injected and left in for an hour to eat through the block and get a blood return. In the meantime, patients raise their arms, arch their backs, turn their heads, and contort in all sorts of uncomfortable and comical positions with hopes one of these positions will position the port into a position that allows for blood return.

Last winter, my port had finally had enough and leaked. It took a couple of months to conclude this, and then a couple of tries to get one that worked effectively. All works perfectly now and I am back to a story of ease and comfort. Some still prefer a line placed in the arm and removed after every visit. They have good veins. Perhaps treatments are spread far enough apart for them. Maybe they only have a 6 month course of treatment and know they will be done at some point in the future. Not me. I’m in it for the long haul and my port is in it with me.

Waiting Room:

The waiting room tells a story of waiting. It also tells a story of worry and anxiety. Schedules get thrown off and I wait a little longer. I look around at who else waits. Not many come alone. Most have a spouse or a support person. They all have their own stories and objects that help tell them. In the waiting room, we are all in the same place waiting to go somewhere slightly different. It’s like the gate area at an airport. Some may be boarding a plane of early diagnosis. Some just flew in for a yearly check and they’ll shortly return to the rest of their lives. Then there are the frequent flyers like me who come often. It doesn’t matter how often I come, the waiting is the same. To read more about the stories of waiting rooms, click here.

Office Visit Room:

Stories of the exam room are mixed. There’s more waiting in this room. With my first oncologist, there was more calm and predictability to visits. He addressed all my concerns, comforted me when needed, and always did an exam. He taught me tons. My current oncologist works in a larger setting – a center within a hospital – and there have been times I’ve felt like I’m on a treatment assembly line. She is an expert, dedicated, and friendly. I work a lot harder to be heard and get what I need, but I do it. Since I’ve been struggling lately, she has shown more empathy. I never know exactly what I’m going to get when I’m in the room for an office visit. It’s unpredictable. I never know for sure what I’m going to get as my office room. The room itself is sterile and pretty much like all the others, devoid of personality.

IV Bag:

The powerful and hazardous liquid in those bags tells the story of treatment. It’s the reason I’m there. Cancer. I have prayed holding the bag before infusion started. I don’t do that anymore since the nurses dress up in protective gear to hang the bag and get it dripping. I’ve sent Reiki energy to the bag during treatment. I’ve felt depressed, angry, and out of my mind while there. I’ve felt empowered because something was being done to kill cancer cells.

Treatment Room:

The treatment room is another area of mixed feelings and different stories. It has been a story of smooth sailing in the past. I’ve enjoyed visiting with nurses. It has even been, dare I say, relaxing. It felt like a natural part of the landscape. I felt I belonged. When I switched treatment centers, the story was revised. It became a story of mild to moderate discomfort. I struggled to belong. The nurses were a bit short with me if they spoke at all. I counted the seconds until I could leave and return to a world where I was more comfortable and felt like a real person. This story has been revised again over time. It feels like home. The nurses know me and we have conversations. I receive comfort while I’m there. I take naps.

Due to scheduling, I’m usually the first one in the chair in the morning. I wonder who will be using the chair after me and what cancer story they would tell. Would they cold cap? The cooling machine is in the bottom left of the photo. How are they feeling?

Scanners:

The MRI and PET machines tells stories of regression, stability, or progression. I’ve been fortunate to have a few scans show regression. Results now tend to be more often progression. Scans also tell the stories of claustrophobia and scanxiety. I realized during my last MRI that the claustrophobia has all but disappeared. It’s about time after nine years. You get used to things after so many years. The scanxiety was almost gone, too. Results from the MRI were already read and released by the time I got home. I prefer it this way so I have time for feelings and plan my questions. I may be upset with the results, but I don’t have to wait for them. It takes a lot off my mind.

Objects have stories. I can look around my house and am able to retell the stories of buying certain pieces of furniture, why a few decorative items are important to me, and recall stories of a few professional objects that remain. As a storyteller, I love collecting and sharing stories. Okay, not as much the cancer stories, but they need telling too.

More Grief

Another friend with metastatic breast cancer has died. Liz and I followed one another on Twitter. I never met her; I never spoke to her. We had several exchanges online. I always read what she posted. Now there will be none of those things.

If you are superstitious, one superstition is bad things happen in groups of 3. Sure enough, this is the third death from the online community in the last couple of months who has died from metastatic cancer. Only one was expected. The other two were shocking. All were deeply saddening. There have been more, but I haven’t had an online relationship with them. Dying is a constant in the metastatic world.

Grief can be a lonely place.

Do I cut myself off from metastatic cancer havers so I don’t have to experience more grief? No, I would not like it one bit if that happened to me. I feel like it happens enough. Plus, I’m just not wired that way. I think very few of us are and these are our sociopaths who have little affect and no ability to feel compassion or empathy.

I’d describe the MBC community as fairly tight. There are a couple of women with MBC I know here at home. I bump into one from time to time and we have a chance to catch up with one another. I have heard of a few online cliques but haven’t experienced these myself. If a time comes when I do, I’m honestly not going to care because I am well beyond the parameters of middle school. I am liked for just being myself. I have found a core group of women who are equally as real.

The online MBC community is nothing short of amazing. Some educate and share their cancer knowledge. Others listen and offer support and empathy. They are role models. We can lean on one another. All are leaders in their own way. I consider these people friends. We can’t just put up walls when someone dies. This is a time to be vulnerable and open ourselves to others who are also grieving.

Please do not make these comments:

• At least she is not in pain. Do not use any “at least” comments. At the moment, there is no bright side.

• Heaven needed one more angel. Honestly, I’ll puke on anyone who says this to me.

• Someday, you’ll move forward. Today isn’t that day so keep your mouth shut.

• Everything happens for a reason. This isn’t comforting.

• Everyone dies. What is the point here?

Supportive comments for someone grieving:

• I’m so sorry for your loss. I’m sorry this has happened. Both of these express sorrow.

• Sharing a memory brings a specific story of a lost loved one that the bereaved may not have heard.

• Offer the person space to talk.

• Ask if there’s anything they need.

• Sometimes actions are better than words. Hugs are their own language.

We are capable of feeling great grief and great love. All of us fall somewhere on the spectrum of grief and love. I feel deeply so I experience both of these intensely. I will experience grief in whatever fashion it presents itself. It’s the trade-off for experiencing moments of joy and love, laughter and smiles, happiness and delight. I have had enough grief for a while. Bring on a little happiness.

To all those grieving, you are not alone.

A Lot of Grief and A Little Hope

“What is a grief journal? It’s a journal where you’re free to write exactly what you’re feeling. You can share memories, feelings, anger, or just daily ramblings. As long as you’re writing, you’re getting those emotions on the page.”

Sam Tetrault

Ultimately, writing is healing. Deep within writing about grief is hope. Grief becomes healing and heling transforms into hope. I’ve found it is a long process.

I think everyone personalizes how they use a grief journal because grief is so personal. It isn’t supposed to be a happy place. I think almost every time I wrote in mine I cried. At some point, the tears lessened. I could read what I wrote and reflect on it without tears.

A working definition isn’t too important to me. My sister and I took a grief class the summer after our mom died the previous spring. I think the grief journal was born there. It appeals to my writing side.

These are snippets from my grief journal. If they don’t fit your definition, you do you.

Many of my entries at the beginning look the same.

7/24/13

Dear Sweet Mom,

I love you and miss you. It’s still too hard for me to put all my feelings down on paper.

Love, Kristie xoxo

Gradually, the notes took on more of a conversational tone. It was like I was writing a letter to Mom. Grief was still present, but it was slowly being replaced by normal life and small doses of hope. If I couldn’t speak to her, this was the next best thing. Somehow I expected the words to lift off the page and swirl the night stars until they reached he in heaven.

8/23/13

Dear Sweet Mom,

I brought in a few of the tomatoes the other day and ate the first one as part of a caprese salad. It tasted good and I so wish you could have had some. Thank you for getting me going on tomatoes and teaching me all about them.

I made rhubarb crunch today too. Very good. I ate a piece for you.

Love, Kristie xoxo

3/18/14

Dear Sweet Mom,

I’m feeling sad and empty tonight. Just keep picturing you at Oak Park this time last year, knowing how hard things were getting for you, and how I was losing you more each day. The next month is going to be rough on both of us. I’m remembering the sad and bad times a lot. I was to replace those images and memories with all the happy ones, but I’m not very successful.  Maybe I’ll try to think of some good Door County memories.

Love, Kristie xoxo

4/30/14

Dear Sweet Mom,

It’s been a year. I just can’t believe it and I don’t know what it all means. It doesn’t make me any less sad or you any less gone. All it means is al the firsts for the first year are over.

Last night I dreamed you called me on the phone. After I picked up and said, “Hello,” you said, “Kristie, it’s Mom.” Your voice was clear as a bell. It startled me out of sleep. Unfortunately, that dream was over and I couldn’t get back to sleep. What does it mean? I will keep looking for signs.

Love,

Kristie xoxo

The last time I wrote in it was 7/28/16. Entries became father and farther apart. Focusing on the grief wasn’t what I needed. I had hope that life was returning to something more normal.

The intersection of grief and hope is hard to explain. Grief doesn’t have to disappear. We all have those moments where it shows up unexpectedly. Hope still floats around this atmosphere waiting for the grief to settle so you can reclaim a bit of that needed hope.

I believe we are not given grief without a way to work with it. Hope is how we work with some of the grief we feel. Not all of it. Sometimes the only way to get through something is to go through it and experience it, tears and fears and all. Other times those pieces of hope are enough to cling to in tough moments.

Poetry is another way to combine grief and hope. This poem is dedicated to my friend Lori Burwell who transitioned suddenly on October 7, 2021.

For Lori

Through grief comes hope.

Through the tears,

Through our fears,

Through breaking hearts

That are tearing us apart

And through the pain.

We know we’ll never be the same.

.

We hope.

We try to cope.

We hope our loved one still sees us

And knows what we are doing.

We hope they are at peace.

We hope our grief will cease.

We hope heaven is real.

.

It’s strange that grief and hope

Share a bond.

Grief comes first.

It lasts and it hurts

Like a bruise that never heals.

Where is the hope?

.

Eventually, the black and blue heals.

Eventually, we begin to feel

And hope replaces grief.

This is my belief.

I hold space for you.

I’m holding space for both of us.

.

Our memories gather round that hope.

We walk through our days as we cope.

We want to touch it

And feel it in our hearts.

If we’re lucky we do.

.

There will always be grief

That returns without warning.

There also will always be

A song of hope

Just waiting to fill our hearts.

.

So much despair

She was not done.

It’s so unfair.

From it we hide and run.

Grief still finds us.

What can we do?

.

The sun still shines.

We advocate, we donate, we hope.

We soothe our souls with

Thoughts of the Divine.

.

Lori lives with the Divine.

Rest without cancer and pain.

Rest in happiness.

Rest in love my friend

Until we meet again.

.

.

.

****************************

What are your thoughts about grief?

Living with Cancer and Living Unwell

Living with cancer and living well is the theme of this blog. Somewhere along the way I’ve gone from living well, to thinking I’m living well, to realizing I am living unwell. When did this happen? How exactly did I get here? It sucks. Can I get back to living well or is this it?

Quality of life (QOL) has been a phrase I’ve always hated. To me it means treatment is done and it’s an attempt at empathy to say the focus is now on comfort. I know QOL can show up from day one of treatment, however, some of my preconceptions are carved in stone. I am a fan of comfort, but also would like to stay on an effective treatment. Besides, I want both. It needn’t be one or the other.

Enhertu was a relentlessly vicious treatment without an ounce of comfort. Nausea followed me everywhere. Either I couldn’t eat when I wanted or wasn’t hungry. Weight dropped off effortlessly. Most of the time I felt a heavy, flattening fatigue. I slept a lot. Why not, it lessened the nausea a degree.

Here is a plug from my fictitious sponsor Ensure. Ensure is delicious, especially the vanilla. And it gives me some needed nutrition. It comes with an immunity boost, too. I love it!

Other lowlights include a two-month hiatus from taking a walk outside. I finally did my 2 mile loop. I was about ten minutes from home when I realized how hard it was and how much energy I was exerting. I need to build up my stamina. I’ve only done it once or twice since then.

A friend has visited me twice where our visits basically amounted to me lying on the couch like a lazy bulldog while she sat in a chair. I couldn’t even sit up.

Most days my makeup consists of eyebrows and eyeliner on days I want to spruce up. Makeup has always been rather minimal for me. Eyebrows make a huge difference. Lipstick isn’t needed because if I go anywhere, I wear a mask.

These scenarios are examples of my not living well with cancer.

At home I’m largely okay. It’s my safe haven. I can eat and rest when I need. Recently, I traveled to Florida. My plane ride was remarkably normal. Once I met up with friends, I found keeping up with them hard. I couldn’t always eat when I needed to but gradually began to do this to fit my body rather than the late hour. I had to say NO once or twice to activities. I still took my afternoon siestas when possible. The emotional toll of the trip and side effects were almost harder than the physical.

What to do now that I’m home?

I rest when I need to rest.

I nap without apology.

I eat what I can and what tastes good to me.

I cancel plans if too tired.

I know who supports me.

Now, I’m on yet another treatment. I hope it’s kinder to my body and more effective. I’d love to get back to living well.

A History of the Number 13

Superstitious people avoid the number 13.

Floors in tall buildings skip from 12 to 14. People don’t like sitting in the 13th row on airplanes. Friday the 13th is considered an unlucky day. There were 13 people at The Last Supper and many still refuse to have 13 people gathered around a table. I ruled out a home while house hunting because the number 13 appeared in the address. My dad also died on a Friday the 13th. It could have been any day, it just happened to fall on that date. It’s weird that I’m able to rationalize the date he died on but can’t with a house address. Maybe I’m a little superstitious.

Hold on 13 seconds. Let’s take a closer look at the number.

America began with 13 colonies. There were 13 stars on the first flags. Those are not bad things. The number 13 is a beautiful prime number mathematically speaking.

Countries that have a strong western influence believe 13 to be unlucky (like the U.S.). Some countries believe 13 is a lucky number. Italy is one country that considers 13 highly lucky because it’s connected to St. Anthony, the patron saint of finding things. India also considers 13 to be lucky. Whatever you do on the 13th lunar day is meant to give you positive results.

There used to be 13 months on our calendar instead of 12. Back in Pagan times, this related to the 13 moon cycles we have every year. The moon is considered to have powerful feminine energy. It corresponds to menstrual cycles that last 29 days. Women cycle the way the moon does. The number 13 represents a continual cycle of rebirth and death. There is fertility and creation. The moon’s energy is the biggest correlation I found to exalting a woman’s spiritual energy and power.

So far none of this is bad or unlucky.

So how did 13 become unlucky?

Men of yore were the problem. Booooooo men of yore.

When Christianity became popular, civilization became ruled by the patriarchy. They made some big changes affecting women. The goddess Freya (goddess of love, her name closely associated with Friday) was labeled a witch. Ridiculous. Friday the 13th became known as the day when 12 witches met with the Devil. Absolute rubbish. Add that up and you get 13.

Buckle up beacause we’re going back even further to Biblical Times all the way to ancient Israel and the Old Testament. This is a time when women had more power and were revered. Women were active in community life except in the priesthood. Women freely engaged in commerce and real estate. Impressive. Specifically, Miriam (sister of Moses) led the women of Israel in worship. Deborah was a judge and a prophetess as well as a wife and mother. Highly impressive. Abigail is mentioned because she managed a political conflict between King David and her husband. Intelligent wives were considered gifts from God. Wow and wow.

My how times changes in the New Testament. Somewhere men seized the opportunity to suppress women. Women’s lives didn’t extend beyond the family. Women were largely illiterate. Men and women were not seen together. Women did not go out in public often and needed to be accompanied by an enslaved member of the household. Jesus seemed to the exception to this rule. He shared his teachings to anyone who would listen. There are stories of Mary and Martha, Mary Magdalene, and the woman at the well. Still, this was not the norm.

If I am wrong with any of this, enlighten me, please. Biblical study is not a strength.

It is believed that some women in the Middle Ages were scribes.

Men simply did not like women having power. Some still don’t. Look at the inequalities of representation in politics, women in other leadership positions, and in pay. Then there are the labels of being assertive versus being a bitch. Many girls are denied an education in certain countries.

Friday the 13th, or an ordinary 13th in the month, is a perfect day to reflect on who you are, your purpose, and your power. Focus on the powerful feminine within and let it flow out to the universe. Let that creativity and power shine.

There is one day allotted to metastatic breast cancer during October. That sucks. It’s October 13th. How I wish all the awareness would level up and address the urgency of research for MBC. If Metastatic Breast Cancer Day has to be on the 13th, it’s more than okay with me. I acknowledge that men get breast cancer and metastatic breast cancer, but here is my message to women. We women can embrace the power the number 13 holds and do our best to change the world.

There is a chance 13 may become a favorite number of mine. Incidentally, I just began my 13th drug. Lucky 13 it is!

The Invisible Life of Addie LaRue

Plot Summary

Imagine that you were a young woman living some three hundred years ago in France. You had your whole life in front of you when you learned you had to marry a widower with children for the good of the community. You didn’t know this man, nor did you want to marry him. You prayed fervently to the favored gods who answered in the daylight, but you never got a response. All you wanted was more time. Time to discover life. Time to fall in love. Time to explore. The night of the wedding arrives, and you run away into the woods to escape. The dark of night and the trees conceal you.

It’s there that you pray to the gods who answer after dark.

The devil appears and makes a deal with you. Your soul for as much time as you want until you are tired of living. Then he gets your soul.

Addie accepts the deal.

This is the plot of The Invisible Life of Addie LaRue by V. E. Schwab.

Addie discovers she has plenty of time. Time isn’t her problem. People remember her only for the present moment. If she pays for something and the seller turns his back, she is a stranger and accused of stealing. Portraits can’t be painted of her; photos show a blurred face. No one can know her; no one can love her. One night stands are the best she can have because her gentlemen friends have no idea who she is when they wake up next to her in the morning.

Addie is unable to leave a lasting legacy and she cannot have her image captured.

Interesting concept for a book. I found it original and philosophically engaging. The ending surprised me. I confess I didn’t care for the ending. In my opinion, Addie’s confidence in herself is flawed. The devil character is also flawed, but these flaws are necessary for the book to end where and how the author intended.

Legacies

In real life, we all want to leave some positive mark in the world, just like Addie. Each of us needs to know our life mattered.

This is especially true for those of us living with metastatic breast cancer.

A personal legacy is more than money or property passed on to others. How a person is remembered is also based on their words, actions, and how they lived while alive. I want to be remembered as someone who was kind and giving, who enjoyed life and tried to both live fully and do some good. Hopefully, I’ll be thought of favorably. I’ve said before that I try to lead by example. May those examples be positive. I’d love for hearts to smile when a memory passes their way or something I have left behind is used.

What else is my personal legacy?

Over two decades of my official life as a teacher is how I believe I’ve made the biggest difference. A lot of children passed through my life and were a true gift to me in countless ways. Some parents have let me know that I’m the one who excited their child about writing or books. Others have let me know I really took the time to get to know and understand their child. I hope I imparted a love for learning, asking questions, and to think carefully to solve a problem. Every morning my class would hear me greet them, “Good morning my most wonderful students.” I would nickname every class the class of awesomeness. I personally emphasized kindness as part of the unofficial curriculum because our world needs more empathy.

Those are the things I hope I’ve done through teaching.

I’ve lived with cancer tried to do it with grace and strength and now with more authenticity. I have not just sat down waiting for the worst. At times, I haven’t accepted everything that accompanies cancer. I’ve tried to teach here, too. People see how I’m living. Sometimes they see it’s hard. There are also those who see what they want to see.

Fundraising for more research at UW Carbone was a big accomplishment for me. It was an accomplishment for cancer research, too. A lot of people helped make it happen. Awareness was raised that was connected to action. I take pride in what I did. I am honored that I pulled some new people into the fold so they could learn and become part of something bigger.

Of course, there will be monetary, property, and other assets left behind. My plan is for there to be enough money to continue the small scholarship I give to a graduating high school senior who plans to major in education for many years. There are a few other charitable contributions planned, along with meaningful keepsake items that I consider legacy worthy.

My writing is another part of my legacy. I’ve printed out each post so there is a hard copy. I hope they are preserved. It’s an impressive stack if I must say so. Other than the writing itself are the ideas I’ve written. Some have been very cancer driven pieces where I’ve written about my life with cancer. I’ve written about cancer issues I’ve experienced and how my perceptions have evolved. In a lot of my posts, I’ve worn my feelings on my sleeve. 

Intangible things are also part of my legacy. We can never really know the effect we have on others. Our attitudes and outlook on life has invisible ripples to others.

Invisibility

And then there are the times I’ve felt invisible like Addie LaRue. Times when I’ve felt not seen or heard. Moments where I feel forgotten. I often feel inconsequential. How can I possibly contribute to society? I’m sick, right? The losses I’ve experienced take away my visibility (career, friendships, health, failed treatments, loss of mobility, loss of favorite activities). Each loss adds a layer of invisibility.

But I am not Addie LaRue.

I am Kristie Konsoer.

I have made contributions to society. I have good family and friends and enjoy time with them. I am not invisible. I am seen.

5 Lessons About Vulnerability and Cancer

Vulnerability is scary. It exposes emotions and opens up our souls to possible hurt and rejection. Hurt and rejection sting.

What then, is the point of being vulnerable?

It can lead to comfort and acceptance. Other people have felt what I feel. Others have thought maybe it was just them until I shared. Or vice versa. It involves trust, empathy, and meaningful connections to others.

A lot of vulnerability comes with a cancer diagnosis. There are many exposed emotions such as worry, fear, sadness, anger, stress, anxiety, and guilt. Layer these with physical symptoms like nausea, diarrhea, constipation, headache, fatigue, bone and muscle pain, and other side effects. Combine these altogether and you get the instability and loss of control that make vulnerability what it is.

No one wants to wake up in the morning and strive to make themselves as vulnerable as possible in every situation throughout the day. Most of our day to day activities fall within our comfort zones. People tend to thrive and feel happy when they feel safe and secure. This holds true to learning, performance in the workplace, and personal relationships.

Yet it’s in those personal relationships where we need to let others in. Not everyone, but those few who offer that trust, empathy, and connection that lovingly support the vulnerable. It’s a two-way street and we can let those in who are vulnerable with us.

What does Brené Brown have to say about vulnerability?

“We can exercise the vulnerability muscle that allows us to soften and stay open rather than attack and defend. This means getting comfortable with vulnerability.”

Brené Brown

“The definition of vulnerability is uncertainty, risk, and emotional exposure. But vulnerability is not weakness; it is our most accurate measure of courage.” 

Brené Brown

How can this be applied to my life? I have five main take-aways:

Lean in.

One of my friends says to lean in. She and others are there to support me. They will sit with me in my pain as I will with theirs. I have had more than enough time to get vulnerable with cancer, although I can’t say I will ever be comfortable with it. I can discuss it somewhat more openly and know what my feelings mean.

Leaning in requires openness and a degree of courage. The outcome of doing so is usually unknown. Life has no guarantees. Unfortunately, some may not receive the authenticity and vulnerability we offer when we lean in. We try again, perhaps a little more carefully, but still courageously.

Illness makes us vulnerable.

Illness unleashes the uncertainty, risk, and emotional exposure that are at the heart of vulnerability. There have been so many ups and downs with metastatic breast cancer. Countless face offs with fear. Innumerable times of sadness, loneliness, and disappointment.

I have turned from a confident woman into someone much more insecure. There is hesitancy in attending social events because of anxiety about looking like a sick person. Sometimes I don’t even want to walk out to my mailbox and be seen. Walls are so much easier to leave up in contrast to feeling exposed.

When I don’t feel well, my defenses are down. Hurt, self-protection, and privacy are why I have defenses. Defenses like lying to questions about how I’m doing. Defenses like withdrawing from others so I don’t have to talk about cancer and me. Defenses like curling up in my safe haven at home.

What I call the Fatigue Factor impacts my vulnerability. Some days when fatigue prevents me from even smiling because I have no energy. Fatigue, any side effect from treatment, makes me vulnerable, but I don’t think in a good way. I can’t do much to reject unwanted gestures, nor could I accept wanted ones.

I need to trust more.

Cancer has caused distrust of my body, myself, others, and medicine.

I am not alone.

Yet, my body is holding on. Trusting myself is a work in process. There are people in my life whom I can trust. I can think through information and my emotions in an analytical way. I gain insight when I write about my feelings, often ending up in a different place than I thought I’d be. Talking through things is incredibly helpful. I was feeling particularly low one day and messaged a friend. We chatted. When I spoke the words I was feeling aloud, I realized I was over reacting. What I worried about was in fact a very small deal. Another day, I stopped at a friend’s house for an outdoor visit and had a breakthrough on why I didn’t feel more anger about no longer teaching. Gratitude is my over-powering feeling about no longer teaching, a little sadness, but not really anger. It’s certainly in my best interest to trust medicine that has stood up to scientific tests and rigor.

I joined a support group when initially diagnosed. It was not a group for stage IV breast cancer. The director at Gilda’s Club told me they were a group of little old ladies that ran around everywhere together. I was 41 years young. Age doesn’t define friendship, but I didn’t think I’d fit. The group met during the day and I was still teaching. I joined a general breast cancer support group and didn’t share I was metastatic. I didn’t feel I clicked with this group either. Women monopolized the time with issues that didn’t seem relevant. Eventually, I stopped going.

I am part of a healing circle now that meets on Zoom. Our small group of six all have metastatic breast cancer. Here are women who have become friends. We have a bond and connection that is tight because we have been vulnerable with one another. What we share with one another has been one my biggest teachers that I am not alone.

I can be vulnerable and still hold boundaries.

Being vulnerable does not mean all boundaries are tossed out the window. Everything isn’t to be shared with everyone. Everything isn’t even to be share with a select few. I have realized that opening myself up more has allowed myself to be stepped upon with an understanding that it is okay because of what the other person needs. Old wounds.

No is a great word to hold boundaries. I don’t need to explain.

Another boundary that rests with me is the decision on what gets shared and with whom.

I can put limits on how vulnerable I make myself. If something is too painful for me to speak aloud, that is okay.

Boundaries make being open with uncertainty safer.

There is space in vulnerability for many feelings.

Let’s look back at the definition of vulnerability: uncertainty, risk, and emotional exposure. Space can be held for whatever the softness opens us up to experience. We can feel grief, growth, hope, and even happiness. I feel them all.

I am willing to show up and be seen.

Who’s with me?

Morphing

I’m a little wren

Nesting in the pine

And singing to be heard

Loudly and sure

Because I have a song to share.

I’m a white rose

Opening in the garden

With petals etched in pink

At the edges

Because my time is now.

I’m a cloud

Floating across the sky

And ever changing

Shape and form

Because that’s what clouds do.

I’m a book

Scrawling with thousands of words

Filled with originality

One you can’t put down

Because it is unexpected.

I’m invisible

Yearning to be seen

Screaming to be heard

Ignored by so many

Because I am incurable.

I’m a candle

Lighting the dark

And giving hope

Wherever it’s needed

Because candles illuminate life.

I’m a butterfly

Fluttering in the breeze

Lighting on flower

After flower

Because I make the world beautiful.

I’m a song

Humming my melody

With a driving rhythm

And I listen to the spaces between the notes

Because they are important to the song.

I’m the sky

Seeing everything below

No matter how I look

Sun or rain, day or night

Because I am always there.

I’m a bee

Working to keep the

Entire world from collapse

With little thanks or understanding

Because I sometimes sting.

I’m a unicorn

Staying as safe as I can

And as real as can be

While I travel with others like me

Because unicorns do exist.

I am a human

With cancer

Wishing to morph

Into someone without cancer

Because I want to be healthy again.

These are the things I am

As I morph from one to another

But I also feel like a puddle of tears

Or a bundle of nerves

Firing uncontrollably

As demon cancer cells

Multiply inside a body trying to stay alive. 

How am I feeling?

I feel misunderstood

And sometimes voiceless

Silenced by a need to conceal

And wear a disguise of a smile.

Look into my eyes.

My eyes don’t lie.

Eyes are windows

Into our souls.

My soul either is a light

Or it is an empty hole of longing.

I want us all to be lights.

What do you see?