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?

Why Hair Loss is a Loss

Here I am writing about hair loss . . . again.

I wish I didn’t feel the need. The people I want to reach with this post won’t find it, have an interest in it, or read it. These, however, are the people who have motivated me to write it. Try, try again as the old adage goes.

Hair loss is grieved every single time it happens. It doesn’t matter if it’s happened before. You don’t grieve a loved one or a pet only once. Hair is not human or a beloved pet, but it is a part of you and your identity that is gone.

Hair loss angers me. Every time it happens, I feel the hurt more deeply. Old wounds open. Physical wounds take longer to heal when cancer treatment causes compromised immune systems. Right now, I have a mosquito bite that’s taking its sweet time disappearing. I think it’s as equally true for the emotional wounds we experience. This includes wounds caused by hair loss. They take their sweet time, too.

Enhertu has caused this a dismal fourth time for me. It has thinned enough to see my scalp in places. It isn’t a total loss, but it is more than enough. More than enough to feel the anger inside. I still have hair, but my appearance has changed. I don’t look like myself. I look like an old man. I can just barely make the cut and not wear a wig. I’m not sure if I’d be more comfortable wearing one or not.

As I sit again with this loss, old feelings and new realizations have surfaced.

Old Feelings

Hair loss is utterly unfair.

Unfair sounds like I’m whining. So much in life is unfair. Everything in cancer is unfair. Let me share a little about how I feel this time. I went through something similar in January. It was winter. I wore hats outside and I didn’t socialize indoors. No one really knew what I looked like except for at my oncology appointments. Hair filled in by springtime. New hair is soft like a cloud made of down feathers. Somehow it provided hope in my life. It showed progress. It needed shaping but that wasn’t to be. Along with a switch to a different treatment, that softness began filling my comb each morning almost three weeks to the day of starting a new treatment.

And it just kept coming. Every morning there was more. It showed up on my clothes. Hair covered pillows. I’d find it in my food or in my mouth. It was everywhere except the one place I expected it to be. I was reminded every moment of the day what was happening. To be clear, I don’t need the reminders. I know I have metastatic cancer.

Hair loss is uncomfortable.

Many don’t understand that a person’s scalp hurts when hair falls out. How could they if they haven’t experienced it first-hand? My scalp itches like crazy. I am not supposed to use products to make it feel better because it may aggravate the follicles and cause hair to fall out. Yes, I’m still trying to follow the rules of scalp cooling even though I wonder if there is a point.

I have no control over it.

Loss of control angers me a lot. Losing hair visually mirrors the lack of control with treatments, efficacy, and side effects. I’m still doing PAXMAN scalp cooling as it is to spur faster regrowth even with loss (thinning, shedding). The cap fits me well. I manage the cold. As I said, I follow all the rules. I’ve made a giant effort to hold on to my hair.

And I can’t control it.

I can’t control cancer.

Hair loss is minimized by most.

“It’s just hair.”

“It will grow back.”

“You have some really nice wigs.”

“You have a nicely shaped head.”

“I don’t know why it’s bothering you so this time.”

Again, these comments come from people who don’t understand what it is like to lose hair.

I DON’T KNOW IF I’LL EVER HAVE IT BACK IN A WAY I FIND BEAUTIFUL AGAIN.

Please think about that the next time you feel like cheering me up with a helpful opinion.

It may never grow back and fill in if I am on some hair stealing treatment forever. But I have some really nice wigs. That makes everything better, right? The intent hopefully is to make me feel better. The opposite happens. I feel minimized.

It’s also possible these comments are meant to make the other person feel better. My hair loss is hard for other people apparently.

“I’m so sorry you are going through this again.” That’s what a person can say.

Identity issues accompany hair loss.

I don’t feel WHOLE without my hair. It isn’t about vanity. Something is missing. And it’s obvious. I understand I am more than my hair. Hair is part of a person’s style. You get to choose whether it’s long or short, colored or natural, worn up or down, accessorized or not, or even shaved. Chemo induced hair loss takes away those choices.

My confidence is shot. I don’t even want to go out to my mailbox because I don’t want to be seen, let alone have a conversation with my neighbors about how I’m doing. I recently declined a party invitation that I probably shouldn’t have gone to anyway because I didn’t feel pretty. I am not filling up my largeness and feel so small. The hair thinning has almost stopped. It’s super short with a few thin patches here and there. The damage is done. The anger remains.

New Realizations

Hair loss anger transfers to other losses of mine, and anger I still have about them. My mother suffered as she got worse and worse before she died from metastatic breast cancer. That feeling of helplessness and lack of control is overwhelming. Even though retiring early was best for my health, losing something that I had put over twenty years of energy into felt like a death. I confidently can say I was good at what I did. I touched lives positively and that has vanished. Some friendships have vanished too. I suppose I have changed. There are some mundane topics I simply don’t care about. It hurts to be ignored. Relationships change. I still feel cut off and isolated, forgotten.

Of course, there is anger for all the deaths caused by metastatic cancer and lack of more effective treatments. Over 40,000 men and women in the U.S. will die this year from MBC.

So, it isn’t just hair.

It’s the pain from the loss of my mother.

It’s the loss of my career.

It’s deep grief over the loss of my health.

It’s all of the things in the cancer world that I have no control over.

Hurt, frustration, fear, and sadness all bubble over into anger because cancer deserves to be called out for all it’s done. For me, it’s called out through hair loss.

It’s visual grief for all these other anger sources that have nothing tangible for me to direct the anger toward. My wounds take a long time to heal, if they heal at all.

Time does not heal all wounds.

Hair growth doesn’t either.

Finding A Way and the Blog Hop

Once again it is time for Nancy’s 2021 Summer Blogging Challenge . This is a wonderful opportunity to learn about one another, discover new blogs, and share more about my own writing process. My approach to Nancy’s questions is much lighter than last year. You’ll see what I mean.

Who are you?

Somedays I don’t know. I see a familiar stranger in the mirror. Who I feel I am seems to change often. My appearance doesn’t seem stable. We are so much more than our appearance. Who I am isn’t based on what I do (or did). It was easy to tie my identity to my career as a teacher, but what remains now that I’ve been retired for five years?

Am I a writer? Amateur photographer? Professional patient? International mystery spy? Oops . . . it’s in your best interest to forget that last one.

Quite simply, I’m me.  

 

This is how I remember myself in better days.

I love pajamas. I make really good brownies. I hate cleaning. I am not fond of chipmunks or ground squirrels (a lot like a chipmunk but bigger with different markings).

Lately, I’ve thought of myself as a depressed optimist.

I spent my career teaching and am lucky I got to do what I loved for so long. Second graders will always hold a special place in my heart.

I’ve always been a reader and a writer. I love relaxing with a good book. I bounce between a couple of writing ideas at a time. I write a blog on living with cancer while living well that you are reading now! Diagnosed with metastatic breast cancer in 2012, I’ve blogged weekly about my thoughts and experiences for the last three years.

A lot of my time is spent focused on my health. 2021 has been harder for me than 2020. Every month I’ve had something that’s presented a problem for me. Hair falling out. A hospital stay. Repeated surgeries. Failed treatments. I am someone who tries hard and is hard on myself when something doesn’t work out. It seems the rest of the world slowly reemerged from the lockdown of COVID and embraced the year more positively than I have.

What’s been your biggest blogging roadblock this year and did you come up with a way to get around it?

I haven’t felt blocked in terms of content and ideas. Material usually presents itself. I’m not sure if that will continue.

A bigger roadblock is exposure. I want to reach more people, but I haven’t garnered as many followers as I hoped I would. I feel established, but I don’t do a lot of promoting.

No, I haven’t found a way to get around it and maybe it isn’t necessary. Being able to share and have people read what I write is a privilege for me. I’ve tried to toot my horn with a Facebook page catered to my blog and cancer content. You can follow that here. What I’ve found is when people don’t have a personal connection from their own experience or through a loved one, it’s too heavy. Photos of puppies and kittens get more attention.

So, basically, I need to figure out how to use puppies and kittens to attract followers.

What’s something you accomplished with your blog this year that you’re proud of?

Spelling.

Try fam-trastuzumab-deruxtecan. It’s both hard to say and spell. The brand name Enhertu is much shorter. Nailing some of these drug names is an accomplishment. How about a cancer spelling bee?

On a more serious note, I’ve continued to publish consistently. I’ve included narratives to share my experiences as a patient. I’ve written more poetry to express myself. Letting some vulnerability show up through my words has been another revealing step for me.

More readers are responding to my mid-week posts where I share a thought-provoking quote. I’ve honestly thought about phasing this out at the end of the year. I felt it hasn’t been very successful at times. I am reassessing what to do with my Wednesday Words posts.

Here is a sample from Wednesday Words. Do I keep sharing these pearls of wisdom?

What are a couple of your best blogging tips?

Blogging gratuities are never expected but always appreciated. I have PayPal and Venmo.

Am I kidding?

Send me some money and find out.

Or you can follow my blog. Those are the only choices.

As a writer, my biggest tip is to write what you want. It’s more authentic that way. Sincere writing circles me back to that first question about who I am. Some of my favorite pieces haven’t racked up the views or comments I had hoped they would, whereas a post on writing and stories is still surprisingly well read. You never know how something will go over which is why it’s important the writer likes it. When my heart shows up through my words, I believe I make a stronger connection with readers.

How do you handle negative feedback or comments?

Everyone loves what I write. Wink, wink. I have received comments offering different perspectives from time to time, but nothing I would call overtly negative. I confess I wouldn’t like negative feedback, but I think it’s best to think of it as constructive criticism and turn it into a learning opportunity. Growth can come from these discussions. Or I can delete them and grow that way.

Share a link to a favorite post you’ve written recently that you want more people to read.

One is such a lonely number. Two is better. Three’s company.

I often return to Love Letter to My Future Self when I need a feel good boost.

Cancer Haiku shares big ideas about cancer in a few words.

A Day of Surgery gives a glimpse into the more medical side of my life.

Thank you, Nancy, for your summer blogging challenge. It’s an awesome opportunity to discover new blogs and share mine. I also love reading my fellow bloggers’ responses to your questions. I hope many others will check them out at Nancy’s Point. Click on the link below to access other blogs in the hop.

Enjoy these dwindling days of summer weather.

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Cancer Olympics

The 2020 Summer Olympics finally have arrived a year late in 2021. Tokyo, Japan is the backdrop to host the best of the best in competition. The Tokyo Olympics will be the biggest ever consisting of 339 events and 41 different sports. The four new sports added this year are skateboarding, surfing, karate, and sport climbing.

My sister and I shared a mostly unused skateboard growing up. Our driveway was level but too steep for our blood. I’ve never surfed. I took karate for about a year to feel more confident living abroad. I had no idea what sport climbing entailed. It looks like rock wall climbing, where speed, bouldering, and lead are scored.

Bouldering is a fun word.

What did you do today? I bouldered. I went bouldering. Fun, right?

I posed the question to my sister about which Olympic sport she would do if she were competing. She chose shotput because all you had to do was turn around and throw a weight as far as you could. I chose to compete in a horse equestrian competition. I don’t know how to ride a horse, but it seemed like the physical work rested with the horse and any finesse and skill rested with the rider. Of course, there is much more involved with both sports. Neither of us is overly athletic. I am at best a beginner in the many active things I try.

I’ve enjoyed tennis throughout life. If I get to imagine my expertise in an Olympic sport, tennis would suit me very well. Badminton was a sport I was always good at. I have a lot of fun memories with badminton.

I segued these thoughts into pondering about cancer. If there were a Cancer Olympics, what would it entail?

We have our sprints where we want to get through something as quickly as possible. Maybe it’s a bout with nausea. Maybe it’s intense muscle, joint, or bone pain. Or scans we repeat every few months. It’s safe to say we want to push through cancery things as quickly as possible and get back to living our lives.

Hurdles are high and constant. Scheduling and rescheduling hurdles. Insurance obstacles. Pharmacy barriers in our path. Lab numbers that must be met to qualify for a race. Cancer in general has many hurdles. They are endless if you have a metastatic diagnosis.

Cancer havers run marathons to keep going. Long hauls are measured in time and difficulty. Stamina is an important part of fitness. On the last night of a recent Door County vacation, my sister told me I had stamina. It was a huge compliment. And I believe it to have been true on our trip. I knew I’d have to be prepared to be on the go all day. I conserved energy where and when I could. I ignored how badly neuropathy was aggravating my feet. I plastered on the smile and didn’t complain. I surprised myself how well I did on the trip.

We do gymnastics balancing on a cancer beam as we gracefully walk, leap, and flip along. How do we do it? It looks effortless. We don’t look sick at all! We’re fine, just fine.

Other sports like weightlifting and boxing lend themselves well to cancer Olympics. Remember just because we carry something well doesn’t make it easy. Getting knocked down and always getting back up one more time is exhausting, especially when you don’t know what’s next. Stamina comes into play again.

Research is a team sport like volleyball, basketball, or relay races. I’d like research to work more in tandem with one another when possible. I feel some trials could be carried out across the country and apply to a wider section of people, hence making results and outcomes even stronger. Let’s work together as a team.

Well, I wondered what others thought about the idea of a Cancer Olympics. I asked for input on Twitter and received more answers than I had hoped for. Some cancer havers responded seriously, some added humor, some touched on similar themes and other replies stood out on their own. I’ve made attribution to individuals unless they asked for anonymity.

Question: In what “sport” do you deserve a gold medal?

Treatment and Side Effects

Janice (@JaniceTNBCmets) Gold medal in mTNBC treatment response and duration, although I can’t take credit for it, no skill involved other than enduring toxic chemotherapy & radiation burns. All credit goes to science & pure luck!

Lori (@lori_burwell) Planes, trains, and automobiles. Most transportation ridden to get clinical trial treatment for 2 yrs between my home and NYC.

Anonymous comment: IV pole dancing.

Jill (@missjillo) Waiting. Waiting for results. For tests. For surgeries. For checkups. For appointments. For everything.

Melissa (@rissiekins) Taken over 5000 pills since diagnosis!!

@_BetsyKate Most beanies, hats, scarves and wigs. (I only ever wear the beanies though!)

Sonya (@sonyagoins1) Gold medal in dancing through breast cancer treatments (chemo, double mastectomy, radiation and ongoing chemo). I’m going on a year and still making moves.

Vicky (@VickyStanton09) Gold in steroid induced insomnia over here.

@ThebigCteacher Changing my PICC line dressing with just one hand. They say practise makes perfect, I’ve had plenty of practise!

@brembles Number of failed port sticks. The day before I was released from my stem cell transplant, three different nurses tried and failed to access my port 8 TIMES. I was already incredibly squeamish about the whole process.

Alexander (@AlexanderVancel) 9 months with a partial bowel obstruction, which required a PEG tube the entire time. I couldn’t eat food, I survived on liquid IV nutrition. Yes, it hurt. A lot.

(@thesaltiestcow) Radiation induced cancer 30 years after radiotherapy for teenage bone cancer. Late effects!

Olivia (@lamLIVJames) Gold medal in chemo brain! I have an official diagnosis of Major Cognitive Impairment from multiple sources (chemo, chemical-induced menopause, anesthetic, hormone blockers, and trauma related to multiple medical errors during treatment. I’m permanently disabled (from age 46).

Noel (@AdvocateRoma) Changing careers twice to stay off disability and remain employed when neuropathy and lymphedema prevent me from continuing successfully in my original field.

Multiple Golds

Kristie (@kkbadger1) My gold medal would be earned in port surgeries. I had FIVE between February and April of 2021 to take out and replace a port. Two more if I include the original surgeries in 2012. I’ve had 12 lines of treatment.

Flori (@CANsurvive) Best Her2+ Breast Cancer-grower. 25 years and still growing new crops with no GMOs. Most body parts relocated to “breasts” (5!). Longest Infusion times for Herceptin: 6hrs 24min. Most Annoying Patient. World Class user of the word FUCK while having Brain MRI.

Silke (@Silke4senate) Recovering my stamina: knocked by lesion pressing on sciatic nerve. Recovered. Knocked by Ibrance. Recovered. Knocked by Piqray. Recovered. Knocked by Xeloda heart attack. Recovered. Knocked out by meniscus surgery. Still recovering. Knocked by bone pain. Hoping to recover.

Ilene (@ilenealizah) Longest plastered on smile, Number of words typed into a text message to explain my condition to a “Normie”, Most losses of family members since diagnosis (same might go for friends), Best economic finagling to get copays and healthcare paid for.

Liz (@lizard817) Not sure I belong on this list just 2.5 yrs MBC. Still on ibrance 125 level. Maybe the number of cancer fractures – all over, all ribs etc… The oncologist 1st PETScan read didn’t use medical terms -“all your bones are mashed, crushed” -teased him about his lack of medical terms.

Linda (@HLindaMahler) I’d be happy for an Olympic medal for “Living with MBC while also sole caregiver of my husband who has Alzheimer’s.” Almost no one asks how I’m doing because his decline is more obvious and I look “fine.”

Gerda (@LoboGerda) I win for recurrences, ya bunch of losers!!!

Big Mama (@BigMama22941275) I don’t need a medal, I’m already a champion. I have won my battles so far, with a huge one ahead. I will not lay down my sword . . . I have a battle to win, even if it’s with my own life . . . I will win.

Patty (@Pattybeatslungc) Perservance, Hope, Faith, Joy

Cancer Centers, Advocacy, Doctors, Scans, and More

@CannotReality I deserve a gold medal for being able to schedule appointments with my oncologist, hematologist, and lab all on the same day. Two of which are in different towns.

Dee (@womenofteal) A medal in reading gyn cancer research journal articles and clinical trial protocols.

@ThanksCancer I deserve a gold in cancer overthinking!

Jessica (@jessicaestes) My 9 year old can sit completely still as a needle comes at her – both her arm for labs and her chest for chemo through the port.

Amber (@tinybuddhamom) Sparring with Doctors.

Nancy (@Nancy_Deol) I would gold medal in constant cancer news reading (Feedly) and hyper vigilance. Or maybe hyper vigilance covers it all.

Chris (@gotthegistofit) Timing my breathing/holding my breath for MRI scans. I’ve got it down to split second perfection.

Diarrhea Dash and Related Races

Rafael (@rafaelmarquez) 15 yard waddle to the bathroom with zero leaks.

Donalyn (@cpddmack) Likely lots of contenders for medal in the pertuzumab dash (with chemo induced anemia – an extra special feat!) and the neratinib dash.

Hilary (@sbl365) Sphincter gold medalist right here.

@MalignantM Fastest time to the toilet.

Family Gold and Other Relationships

Kelly (@stage4kelly) Gold medal in eye rolling at all the people who tell me I’ll beat cancer. Gold medal in making cancer muggles uncomfortable with my chirpy “not dead yet!” answer to “how are you” (with sad eye head tilt).

@FollowHeidi Parenting toddlers and working full time while going through chemo. Also; pregnant at the same time.

Addie (@AddieDvorak) Watch and Wait gold medalist son over here.

Amy (@AmyDemilt) Gold in making everyone else feel better. Saying “I’m fine” and that makes them feel good. Gold for family that doesn’t talk about anything important, especially illness.

Tabby (@tabbypotter) Winner of pretending it’s all ok when most my family on both sides pretends it doesn’t exist.

Chris (@ChrisinMass) My brother’s profanity . . . he would be for sure a gold medalist.

Faking It

Michael (@bodagetta) Pretending I’m ok when I’m really not.

@LBSamuelsson I might be the “I’m fine” gold medalist.

Tracey (@GrinterTracey) Uncurling my fist, instead of putting it in someone’s face, when they say “but you look really well.”

Elizabeth (@ElizCLT) Managing strangers’ feelings.

There is so much involved in Cancer Olympics. Kristina (@kristinabaum) commented she kind of wished there was a Survivor Olympics. She lists on her profile she is a distance runner and a triathlete. Best wishes to Kristina in her competitions. I get the feeling she could kick ass in any competition she enters. I wish I had that athleticism. (This is a good time to picture me trying to clear a hurdle.) I can’t speak for Kristina, but my feeling was she wanted the opportunity to prove that a person can come back stronger or just as strong as before diagnosis and completed treatment.

I get it.

But there are too many survivors, too many who have died, and too many who are living with metastatic cancer. We ALL deserve gold if we have heard those chilling words, “You have cancer.” We could fill Ft. Knox. Fund a cure. Not have a Cancer Olympics.

Terri (@6state) had a similar comment about affirming what her body could achieve after cancer. Rowing is her sport where she’d medal as she did it in college. She wrote she now rows at the gym to maintain her health after 6 surgeries, chemo, and radiation. I love that she acknowledged how I often feel when I exercise or have to prove to myself I can do something. She wrote rowing “gives me affirmation after that assault, my body didn’t betray me.” Terri does not have metastatic disease. I unfortunately do. In the metastatic world, my body betrays me a lot, and yet I’m lucky I still have it.

Robin McGee (@TCOrobin) has written an award winning book titled The Cancer Olympics. I may have to check it out. The cover features a photo of those continuous hurdles. Tony Collier (@ethansgrumps) blogs about living with prostate cancer. He replied his gold medal would be in perseverance. Thanks to both Robin and Tony for sharing their related work.

Endurance and stamina come through in all the responses. Somehow, we keep getting through unimaginable things where all our training is in the moment with new situations. I am grateful to everyone who shared their thoughts and part of their cancer experience. I am touched by your honesty and still laugh at those touches of humor.

Thank you.

We are all gold medal winners.

To Be An Untamed Cheetah

Glennon Doyle thinks about life differently from the mainstream population. I think I understand one or two basic ideas about life. Then I read her book Untamed, and she turned them upside down. 

Recent books I’ve read have been a topic of posts lately. This book reminded me that being untamed, even a little untamed, is the way we are supposed to be all along. The chapters are often short segments of storytelling where she makes her point through metaphor. Her style speaks to me as I often use narrative and metaphors to craft my writing. She gently encourages and inspires as she writes, sharing her story and thoughts with readers. There is a lot that resonated with me in Untamed.

One of those ideas is how we become adults and take our chosen place in society. It’s a chosen place we’ve dreamed of, worked hard for, and understand what our role is to be. Glennon draws a parallel between this life and a cheetah at a zoo who has been trained and tamed to mimic a dog rather than act like the cheetah it is.

She defines being tamed as meaning you have made yourself fit. We have been conditioned by the people and life around us. We have learned how we are supposed to act and feel rather than be act like our cheetah selves.

I took my place as a teacher and understood that I was seen as a teacher outside of the classroom as well as in it. Not being wild and crazy, I fit the persona well. Nurturing, well-liked, respected, and all the other positive qualities you would want to assign to a teacher. Underneath all that, there was also an expectation that you would not openly challenge authority too much. It contradicted teaching children to question and think critically. I didn’t challenge anything too much until I was diagnosed with metastatic cancer. It became clearer over time that I didn’t need to (and couldn’t) make myself fit. I do believe age and growing older also causes changes in our confidence and how we see life. I was able to behave more like a cheetah.

Women behave more like cheetahs as we age. Society wants to call us cougars. That label portrays women only one way. No, not sorry – we’re cheetahs. Get out of the way.

Women especially have been tamed to fulfill certain norms that are outdated and antiquated. We take care of others first. We may not reach high enough. We accept put downs from one another. About a month ago I listened quietly as women commented on young women who would never marry or have children because of metastatic cancer. Well, I’m no spring chicken, but there I was with no hubby and no children. The comment wasn’t meant to be hurtful or even apply to me, but that tamed part of me silently took it in rather than roaring. I’m tamed.

She goes even farther with a personal story to emphasize how unhealthy it is deny yourself permission to live how you want. Glennon described the time when she had neurological Lyme disease and was sick for two years. She couldn’t function and spent the majority of those two years in bed or swallowing pills. She felt better when she visited a friend living in Florida and it was then she understood she needed to stay there. Not only did she need to stay there, she wanted to stay there because she always had loved the beach.

We shouldn’t need a brush with death to learn how to live.

We always should honor our true selves.

In many ways, living with metastatic breast cancer has given me that permission to live more truthfully. I won’t say it’s allowed me to live as I want because I don’t want to live with all the suffering and uncertainty that accompanies cancer. I wake when I’m rested most mornings rather than rolling out in the dark to an alarm that sounds way too early. I don’t put in extra hours at a job I love just to feel like I’m barely keeping up. I don’t put myself last. Instead, I have time for me. I can take chances to do things that before cancer I would never have dared. When it comes down to it – no one cares and no one stops me.

We all need to live how we want.

Glennon Doyle wants us to shake things up a bit. Maybe a lot. She writes a lot about learning to be brave and become true to yourself. Our purpose is to live authentically and fully.

Here are a few ways I’ve seen myself becoming untamed:

• I’m an active and vocal participant in my medical care.

• I say NO more often.

• I have control over my own show and I like it. I can get a lot done when I can envision a goal and fully pursue it.

• I ask a lot more questions.

• I express my opinions more often.

I haven’t been to a zoo in a few years. The closest zoo to me doesn’t have a cheetah exhibit. Of course, all the animals are confined. They are there so humans can see wild animals. None of them behave as they should. They are tamed in the Glennon Doyle sense of the word.

Cheetahs are symbols of patience and intensity. As a spirit animal, they remind us to prioritize and set goals. I want to let my inner cheetah run wild. I want to move stealthily and quietly to get what I want.

Ah, to be a cheetah is to live more untamed. I will be more unleashed, uncaged, and even more wonderful than I already am.

Love Letter to My Future Self

A writing prompt is often given to write about what you would tell your younger self. I think the idea is an older and wiser person could reflect on the insecurities that never came to fruition. Maybe it’s an opportunity to focus on all the positives that have come to pass. As we age, we learn about what matters in life, where we find joy, and experience a stumble or two we’d like to avoid if given the chance. We don’t get to go back in time for do-overs. My younger self would feel doomed if I told her she wound up with metastatic breast cancer at 41. Wouldn’t she have the opportunity to change it? She sure tried. She/ we/ I had diagnostic mammograms for years in our 30s due to my mother’s breast cancer. It wasn’t enough. Cancer was missed. I know when I think this happened. I was dismissed and told not to worry when I was sweating profusely. Major sweat blobs. I think my lymph nodes were blocked, but I’m not a doctor. Iffy mammograms were followed up by ultrasound and I was always given an all clear. I can’t go back. Telling my younger self to be proactive wouldn’t help.

I was proactive.

Looking back at what could have been “if only” doesn’t provide comfort. The past is unchangeable. I think all of us feel a certain invincible quality when younger and that bad things can’t touch us until we are much older. Quite simply, it’s unbelievable. Our lives stretch out indefinitely in front of us when we are in our twenties and even our thirties. Our lives are finally just beginning.

So instead, how about standing where you are now and advising your future self? Now there’s an interesting prompt. It creates an opportunity where you can pause and dream about goals. I find myself looking back and forward. There are some logistic factors that don’t jive well. My future self would already know what happened in present time. Well, the metastatic breast cancer is out of the bag. I am wiser, know what matters to me now, and what brings me joy. For a few moments, I set my modesty aside as I think about my future. Here is what would I like to say to the me ten years in the future.

Dearest Kristie,

How did you make it to your 60s? I’m not sure, but know intention is something you carried with yourself day by day and projected into the future. Hope and sheer belief are part of it. Somehow you kept going.

You’ve been through a lot over ten years, but you’ve come out better for it.

Life is good.

As you know, you’re still awesome. People appreciate your perspective and wisdom. You are still a trusted ear where others share their private thoughts. Your sense of humor still makes many smile and laugh.

I’m proud of you. You never gave up belief that you could go into long term remission. You continued to give back to Carbone Cancer Center. They listen to you, sort of. You’ve supported their research. You’ve spoken publicly at various functions. I am glad you are working for others in hope they have the same outcome as you. You are a driving force.

I know you’ve worked hard. You’ve had hundreds of treatments and endured even more side effects. You’ve submitted to so many tests and scans so you would have information to plan what’s next. You’ve swallowed supplements and medications that have improved how you feel.  You rejected norms, medians, and negativity from Day 1. You’ve embraced exercise, therapy, affirmations, and surrounded yourself with those who are supportive. You’ve even tried a few crazy things. You’ve worked on having fun and staying hopeful. You made plans. You worked hard.

You look outstanding!

Seriously girl, how do you do it? Cancer ages a person and it did on the inside. Lots of physical things happened on the inside that made you an old lady. And there was a good year during the COVID pandemic where your hair and outward appearance took some punches from tough chemo. Oh, how you loved your yoga pants! You still can’t decide if you’re more gorgeous with white shimmery hair or the more youthful brownish red from the magic bottle. Keep up the good work. You are beautiful.

You still help others. You have found a way to connect with children again and share the love of learning and thinking. Besides being happy and healthy with a few people that love you, it’s really all you ever needed. Hold on to it tightly.

Keep holding on to belief and hope. Never abandon these. They will always serve you well.

I know there are readers who are thinking I’m delusional in writing about my life ten years from now. Researchers can’t put their finger on why some survive for decades with metastatic cancer. What if it’s pure denial? What if it’s the delusion and the denial that got me here? Denial has its merits. I’ll do me.

You are loved by many, including yourself. You’ve tried to return that love to others.

Much love,

Kristie xxx

A favorite photo from spring

This is very similar to another writing activity where the writer sits down, envisions the future, and writes about life ten or twenty years from now envisioning it as well as it possibly can go. There are connections to taking an active role in your life rather than a passive one, setting goals and planning, and daring to dream. I completed this activity about five years ago. It is filled with some very concrete ideas. Retiring with a full retirement package came true much earlier than planned. I was on medical leave, so the writing was on the wall. Writing was mentioned, blogging was not. I’m now well into my third year blogging.

I hope you make the time to write yourself a letter and tuck it away for a decade or so. Time flies. Don’t wait. Happy writing.

Always.

Largeness

The Book

I highly recommend The Book of Longings by Sue Monk Kidd. It is a fictitious novel set in biblical times about Ana, the wife of Jesus. She is the main character; Jesus is secondary. It does contain historical content, but it isn’t preachy. It focuses on Ana and women’s power, or lack thereof, during this time. I chose it for book club and our discussion was layered and went much longer than our usual time.

Largeness is one of the book’s themes. The reader sees this in the opening pages when Ana reads a prayer she wrote inside her incantation bowl:

 “Bless the largeness inside me, no matter how I fear it. . . . When I am dust, sing these words over my bones: she was a voice.”

Ana was privileged to be a woman who was educated and knew how to read and write. When her marriage was arranged to an older man whom she didn’t love, she was told all her scrolls would be destroyed and she wouldn’t be allowed to write once married. She hid most of her scrolls, leaving lesser ones to be destroyed. I loved her daring spirit. Ana spoke back to men and even argued with them. Against all laws and expectations, Ana took papyrus from someone who betrayed Herod Antipas (also an enemy of hers) and she declared it a parting gift bestowed on her for her departure. The others called it stealing. She caused trouble often. Her intelligence and the fact that she was always underestimated saved her often.

Many attempts were made to silence Ana because she was a woman in a time where women had no power. She lived with great passion during a time, place, and culture where females were silenced. Jesus recognized that Ana was an equal. He didn’t try to silence her.

Way to go, Jesus.

Ana and Jesus separated about halfway through the book while still being married and devoted to the other. Jesus planned to focus on his calling and ministry. Ana needed to flee to Egypt because her actions made it unsafe for her to stay in Galilee. When they were alone together on the morning Ana departed, Jesus looked deep inside her and said, “I bless the largeness in you, Ana.”

She responded, “And I bless yours.” 

This is a simple but remarkable exchange between the two characters. If you’re reading in a hurry, you’re likely to miss it. Where it seems natural for Jesus to recognize the largeness in Ana and know that she has to go boldly to Egypt, Ana’s reply is stunning. Her largeness, her voice, to offer a blessing back to Jesus as an equal, speaks to her confidence and how she sees herself in the world.

Ana’s largeness takes hold in powerful ways in Egypt where her intelligence, abilities, and courage emerge even more. Her largeness and voice shine the most in this part. I fear I have already given away too much, so I will stop and urge you to read the book on your own.

My Own Largeness

The Book of Longings returns to the idea of the largeness within people. Questions in one of the reading guides include: How do you conceive of your own largeness? What inhibits it? Do you agree with Yaltha (another strong woman character) that passion to bring forth largeness is more important than the largeness itself?

First of all, yes, I agree that a person needs passion in today’s world to bring forth their largeness. Finding one’s authentic voice and using it is how I define largeness. Being heard and being a voice challenge each of us. Whether we teach, write, create, solve, research, parent, or something else, there are a lot of voices out there. As a teacher, presenting reading objectives involved daily passion and larger than life moments where backing up ideas about characters with evidence was the most important thing at that moment in time. When I switched hats to writing teacher, including details, actions, and dialogue became the large idea I made ten times bigger to be effective. Number sense and understanding the beautifully logical world of math was a passion with math. Passion and largeness overlap together.

Thinking about my largeness as a teacher holds some contradictions. There was some stifling by school policy and things like class size, standards, curriculum, assessing children, and evaluation of teachers. There were only so many minutes in a day but the expectation that everything got done was constant. I also look back and see my classroom as a home of learning and fun. I had thousands of books. Read aloud was my favorite time of day where we could just relax. Each child brought something special and made our collective whole magical. There was an intangible largeness that I brought there every day. Beliefs about learning and learners, the relationships with children, and what I transformed the classroom into each day are large ideas in action. Small accomplishments became large. Work, perseverance, revising, continuing to use your voice, teaching and learning with purpose, knowing your why, and having fun all contribute to the largeness I remember teaching.

Those teaching days are gone. Where does largeness live for me now? Over the last few years I’ve really come to not care what others think and I might as well do what I want and what I feel needs doing. I don’t have to explain as much to others. There were rules and expectations that I was to observe as an educator and in my family. I’m far from revolutionary or extreme, but I am much more of a badass now that there is freedom from regulations I don’t have to follow. I can ask a school board member what exactly he means by “restoring order” in the classroom because his perception of order may be different from one that has a little disorder but lots of learning happening. I can be as blunt as I need to be when at an office visit or treatment because what’s happening affects my body. Largeness now leaves less rules for me follow.

Rules can prevent largeness.

Cancer Connection

Where is my largeness in the cancer world? In my own way, I use my voice to make a difference for others, to bring awareness, and a bit of light to the world. It’s small, but I still reach people. I blog, I have fundraised, and I’m a patient advocate where I receive cancer treatment. I use social media to continue to grow my largeness. I feel larger with the friends I have made in that world. We share our largeness and our voices for a common cause.

How has cancer tried to silence me? Even though I have largeness, I often still feel invisible with metastatic breast cancer. The multiple ads on TV show thrivers who look amazingly healthy. I’m paler than usual and have lost my glow. I look and feel old. I know MBC isn’t always visible on the outside. But I also know there are a lot of ways we are hidden from the public eye. I’m starting to mull over an idea for October largeness where those with MBC post brave photos where we clearly are not at our finest as part of a reality campaign to raise money for research for metastatic breast cancer. Stage IV always needs more. It may not be pretty, but it would be loud and LARGE.

Maybe I should get a billboard. That sure would be loud and large.

For myself, as I read thoughts from those living with cancer, there often is a common thread from some that they better get out and do something worthy (large) while they have the chance. I have stepped boldly into new roles with my writing efforts, sharing my photography, and through fundraising and patient advocacy. I’m always working to improve my fitness. I’ll continue those and whatever else presents itself along the way. Like Ana, we all want to have been a voice and be heard long after we’re gone. For me, I think my words, my writing, have the best likelihood of my voice being heard and staying large.

In yoga, the thriver pose makes yourself large. How fitting. Your arms are stretched out to the side and lifted above your head to the sky. You literally make yourself as large as you can and feel your power while you breathe. It is good to take up more space.

I will take up as much space as I can. I will use my voice.

Write What You Know

To write what you know is one of the biggest nuggets of writing advice that comes from authors. It doesn’t matter if the writer is published or unpublished, well-known or obscure, or a beginner or someone highly established. Writing what you know allows the writer to draw upon personal events where details can appear more naturally and make the writing feel more authentic. This advice applies to so much more than just events. We feel a wide spectrum of emotions ranging from euphoric to gut wrenching as we live through these events. Writers know emotions and must write those emotions. I believe this is why we get hooked with a story we feel has nothing to do with our lives. It isn’t the mob lifestyle or unspeakable events from Nazi Germany during WWII that pulls readers into a story. We identify with characters who feel what we feel.

As a teacher teaching second graders, this often meant I read lots of informative pieces on playing with pets, narratives of a summer trip where a flight was as exciting as the destination, and realistic fiction stories about camping, sports, or school. Most kids have fairly similar experiences coming from the same geographic area and being so young. The joy of writing, experiencing success, and becoming more independent writers were always wide-ranging goals in any piece. I wanted kids to write what they knew. Writing about what they didn’t know was a blank page.

It’s the same with me.

As a reader, I look to sources who are experts. Mitch Albom. Sue Monk Kidd. Brené Brown. I go back to favorite authors as well as whomever I’m reading at the moment to reread passages and examine what made them effective. I read like a writer. I love words and storytelling. Even when reading fiction, I understand authors research their topics to make stories credible and realistic. Many factors make writing come alive.

I ask myself, as a writer, what do I know?

Cancer

Unfortunately, I know too much.

My mother had uterine cancer that was successfully removed through surgery. It gave me an early example that disease would always be caught early and without much inconvenience. I recall a couple of years later telling friends she had been diagnosed with breast cancer and that it was going to be harder but that she’d be okay. It was harder. Mom had a partial mastectomy followed by chemotherapy and radiation. I became an expert on her health and breast cancer knowledge. Information was power and I wanted to understand all of it. All was good for years. Golden years.

And then it wasn’t. She wasn’t.

Looking back, I’m not sure if she cared for all my pearls of wisdom that I’d learned. I likely was annoying. It’s very different when the shoe is on the other foot and you have been diagnosed rather than a family member. I want my information but have a bit of an inner attitude when someone who isn’t an authority drops false information at my feet.

My metastatic breast cancer diagnosis came about a month or two later on the heels of hers.

There is a lot I could write about from my experiences with cancer with my mom and from my own. I haven’t mined memories of it with my mom because of the pain. I don’t feel as much pain with my own. I’ve found it to be cathartic and a home to give voice to the pain and whatever other truths need speaking.

Others write from a very factual perspective of their experience. Expert background experience support their writing. They write from legal, medical, patient experience, and personal experience perspectives. Others share raw emotions and reactions to what’s happening in their lives through poems and deeply personal reflections. I tend to write about cancer from the lens of what happens to me and my thoughts about it. Factual information gets sprinkled here and there as it impacts my chosen subject or theme. We’re all invited to sit a while with these perspectives and stories of shared experiences.

Write what you know. I know cancer.

Feelings

Emotions were mentioned at the top of the piece. We all experience universal feelings. Fear. Despair. Loneliness. Humor. Love. Hope. Spirit. A small event of forgetting music at a piano recital can pack some huge emotions of not feeling supported, being humiliated, and hearing your parents lie to you about your achievement. It’s still a tough memory for me. This story can be more powerful than a story that retells a death in the family that is void of emotions. Emotions and feelings spill over in writing because the goal is for someone else to understand and connect with what was written. When I think of a common quality that’s at the core of favorite books, or dare I say even things I write, is the desire to be understood. We crave that as writers and readers.

Feelings are our emotional truths.

Stories of good times on Grandma’s farm help me preserve memories that I want to remember. Her home is a strong example of how emotions create the writing. I took a photo of her farm from out in the field one winter. My grandma, dad, and mom were all warm inside visiting after our Sunday meal. I wrote about how the people I loved were in the photo even though I couldn’t see them as part of an assignment in college. Later, I wrote a poem about it. Years later, this house is in disarray. Raccoons have taken over and hauntingly walk on keys of the damaged piano in the night. A cousin’s son and his wife moved onto the property into the more modern home across the drive when they married. They see the old house as dilapidated and scary (I do too) but more of my emotions are grounded in Sunday visits, time with Grandma, and playing with the farm cats. I sent my cousin’s son a copy of the poem so he could see the abandoned house as a home for a few brief moments.

Write what you know. I know my feelings.

Experiences

Small experiences can have big impacts. I remember winning a cake at a cake walk when I was about six and it was the first thing I ever won. It was a carrot cake with nuts. I was allergic and unable to eat it, but I had won something and felt special. Memories playing at the playground across the street fill many childhood memories. Camping in Girl Scouts. Family vacations. Being bullied. Never knowing if you really fit in. I remember holding my dad’s hand in the ICU and watching it shake trying to find mine after one of his heart surgeries. I have entertaining experiences throwing dinner parties, both fun and disastrous. News of a good scan. Not so good news. There are arguments and celebrations. Little events make a life. Although short, this brief list weaves together experiences with emotions. Most are waiting to be written.

Hope isn’t an experience as much as it is a belief. This belief has been a driving force in some of my experiences and many of my thoughts. Links are provided if you’d like to go back and read past posts. Hope is what I know.

Hope, Belief, and a Monthly Planner

Doom Dibbling or Hope Harvesting

Write what you know. I know my experiences.

Teaching

I know a few things about teaching after twenty-three years in the classroom. Best practices in curriculum and child development have come and gone. Co-workers and students have provided so many stories that you can’t make up. Classic one liners that still make me laugh. One year each child reminded me of a different breed of dog. I loved that class. One year there was a child who had some obvious unidentified emotional issues but who could work quite successfully under his desk. I loved that child as challenging as he was. Another year there was another child who inched her way closer and closer to the door and thought she was hiding. She was a character. I remember mistakes I’ve made like working with glitter as part of projects. I could write about lockdown drills. There is endless material. I can remember where I stood when I learned my dad had died. I know where I was when I got the call that my mom had taken a turn and the end was near. I can bring up the moment where a friend told me she was pregnant. The day I shared with my students I had cancer and couldn’t be with them is still fresh. So many nonteaching things happen within the walls of a school. The things we’d hear if those walls could talk.

I was happy teaching. At times I was frustrated. I felt successful, secure, and safe. Teaching was home.

Write what you know. I know teaching.

I’m not the only one who knows these things.

What do you know?

Cancer Haiku

Haiku is a form of Japanese poetry that usually is about nature themes. It’s written in three lines of five, seven, and five syllables. I find it a beautiful way to create images and stir feelings. Writing it has made me a stronger writer because I must be concise with a finite set of syllables. I often find myself walking around thinking in syllables. I have broadened the scope of my themes when I write haiku to take on personal experiences as I live with metastatic cancer. I offer glimpses into my heart with a bit of that imagery and feeling I’m hoping comes across in seventeen syllables. The more I write, I better I get. I hope you connect with them in your own way.

I answered the phone

the voice said you have cancer

and everything changed

but you look just fine

you can’t be metastatic

you do not act sick

tears on my pillow

tears and sobs in the shower

tears behind a smile

chemo in my veins

chasing after cancer cells

killing good and bad

you’ve stolen my hair

my eyes have a lifeless look

I’m pale, weak, and scared

scars on the outside

reflect little of being

scarred and scared inside

we can land on Mars

and urgently make vaccines

we can’t cure cancer

who is this person

who stares back in the mirror

she looks familiar

the dreaded scanner

I lie inside motionless

hoping for good news

nervous in a gown

waiting for fate to unfold

in the next minutes

we need more research

and more effective treatments

to save those we love

cancer spread elsewhere

is known as metastatic

and cannot be cured

wicked cancer cells

how did this happen to me

how is this my life

cancer side effects

suck everything out quickly

that helps us feel well

sleepless once again

I lie awake unable

to dream something else

positive thinking

balances hope and science

when you have cancer

spring turns to summer

my next season is unknown

I live in the now

petals on a rose

lovely and soft and alive

how long will you stay

bad thoughts creep inside

my heart about when and how

that I push away

dying is rebirth

to where our souls remember

and feel love and light

The “I” in Patient

We all know there is no I in TEAM.

But there is an I in PATIENT.

I am an integral part of my care team.

I am the reason for my team.

I am the team member who is affected by decisions.

I care the most about those decisions.

I understand my health well.

I know how I feel.

I track my side effects.

I notice minute changes in my body and how I feel.

I take charge of my health.

I don’t accept no easily.

I believe in science and in myself.

I should not be discounted.

I won’t stay in my lane.

I participate in my care (which is my lane by the way).

I advocate for my needs.

I ask questions.

I don’t just have cancer.

I have feelings.

I use my voice.

I get tired from having to push so darn hard to be seen and heard. My biggest annoyance lately has been feeling like my voice doesn’t matter because I am the patient. There have been a couple of recent instances where I’ve literally had to say something along the lines that I could be consulted and believed. I had helpful and needed information. It’s hard for me not to let anger filter through some responses. Information I bring to a conversation isn’t validated until it can be cross-checked with my oncologist or my record. Some information isn’t entirely correct in my record. It needed to be written a certain way as it was the lesser of two evils. I understand facts are not up to interpretation, but not all of them are black and white. Facts have circumstances. Specifically, facts can change in terms of what I was given in initial scans versus what I need currently.

It took me about 5 phone calls over 3 days to get my last set of scans scheduled. I’ll try to be concise. I had heard nothing after a week. I found that unacceptable and began going through the proper channels so I could get them on the calendar. A recent conference call with a scheduIer in imaging and scheduler from my oncologist’s office upset me. I began to lose it after about twenty minutes of the run around and some misinformation in the initial orders (a case of botched facts). I’ve paraphrased two especially bothersome exchanges.

Imaging Scheduler: It says here you need a premed.

Me: No, I usually don’t take anything.

Imaging Scheduler: If the oncologist believes you need medication for the scan, they will order it.

Me: I don’t need anything because I don’t get the additional contrast dye. You might want to ask me as I’m the patient being kicked around. I know what I need. I won’t consent to take something that I don’t need.

The conversation kept deteriorating. I was close to tears and knew I was getting stuck with the short end of the stick. We all knew I needed accommodations and yet I felt I was being blamed because slots were full. I had been trying for days to make progress with getting these tests scheduled.

Oncology Scheduler: We can proceed with your next treatment only if you can get your scans before your oncology and treatment visit. Otherwise your treatment will need to be pushed to the next week.

Me: Well, that’s a real shitty deal for me, pardon my language. My treatment is a pretty big deal. I need it on time. I’m being treated like I’m not even human. Now, I can come in on two separate days so I can fit these requirements because several people have dropped the ball in getting the scans to happen.

My frustrations were understood.

Right.

We scheduled scans at inconvenient times on two separate days because I had little choice and needed to set definite dates and times. I would do what I had to do. Always do. Always will. The imaging scheduler was going to keep working and see if she could get them on the same date. I wasn’t going to hold my breath. I would place a call to the patient relations department and let them know that known scans needed to be scheduled as soon as possible after an oncology visit so the patient isn’t left burdened for no valid reason. They could do better. I also wanted to suggest beginning the scheduling process sooner for myself if I needed accommodations. You can bet I’ll be bringing this up sooner than is needed so the process is easier for me next time.

My phone rang the next morning. It was the imaging scheduler who had found a way to get my appointments to work with the accommodations I needed, at my preferred location, and on a date that didn’t interfere with my treatment. I scarcely believed it! I felt much better about the fit I pitched a day earlier. I thanked her repeatedly and let her know how much it meant to me to have her work so diligently on my behalf. She made my day and I told her I hoped she would treat herself to something enjoyable, whatever that might be.

Sometimes I feel very Jekyll and Hyde. I am really quite delightful when my buttons aren’t being pushed. I would rather work toward solutions amenably. Life is smoother for everyone that way. However, I can unleash my fury quickly when I’ve had enough. I had had enough. I feel like I’m like my own attack dog when this happens. I am all I have.

Then there are the times I feel like I’m not an agreeable patient. I wouldn’t describe myself as noncompliant, maybe some medical professionals would. Too bad. I ask questions and advocate for what I need. Cancer has taught me a lot.

I am a patient.

Listen to me.

Include me.

Value me.