Anchor Moments

Anchors offer security, safety, and control. They keep a boat from floating aimlessly and becoming lost. It’s like a bookmark is to books. Or glue holding a craft together. All these hold something in place.

An anchor chart supports learning in the classroom. It is meant to serve as a reference and move students towards success. In my teaching practice, I had some reading and writing anchor charts that would come out for specific units, whereas others might live in classroom year-round as a permanent anchor. I have been retired for five years now. I no longer have any of my large size anchor charts that I made. Here are some of a friend and former colleague. You can check out more of her work at The Interactive Teacher.

I’ve thought about anchors lately as I continue to go through treatment for metastatic breast cancer. No, I have not made one for cancer. I’m tempted. It would lend itself well to words, visuals, webs, and charts, but I don’t know what point it would serve. I see all of it in my mind; I don’t need an anchor chart.

This is a chart on conversation starters I used. It’s from the Lucy Calkins’ Reading Units of Study.

I could see an anchor chart on conversation stoppers. Here are some examples:

• I’m not going to _________. (discuss that with you, go out for dinner, jeopardize my health)

• Thank you for asking. I don’t feel like talking about it.

• That’s none of your business. Let’s talk about something else.

• I need to ___________ right now. (rest, sit down, catch my breath, nap, hydrate, eat, be alone)

• No. (Covers a wide range of responses.)

• Blank stare. (Also covers a wide range of responses.)

Perhaps a chart of potential treatments or trials I haven’t had yet and pertinent details could be useful. Very useful. The illusion of organization amongst my chaotic cancer life would be welcome. But I don’t want to stare at it 24/7.

Anchor moments were birthed from what I know about anchor charts. These anchor moments would serve as a reference to move me back to hope when I’m feeling depressed, disappointed, or frustrated about how I’m feeling or bad news. A person doesn’t need to have cancer or an illness to benefit from anchor moments. We all have favorite times we remember when we felt happy. In a nutshell, anchor moments equal favorite moments.

Here are a few of my anchor moments:

• Christmas morning as a child with my family

• Rare times when it was just Gram and me

• Bedtime songs that Dad would sing nightly

• Snuggling with my childhood dog

• Standing atop Arthur’s Seat the first time I climbed it and overlooking Edinburgh

• Memories from reading and writing workshop

• Walking in my favorite part of the arboretum no matter the season

• Waking up slowly in that time between sleep and awake feeling well rested

• Laying my head on my pillow at night and counting the day’s blessings

• Lots of Door County vacations with Mom

• Sitting in a lavender field

• Favorite photos of flowers like pink zinnia, champagne rose

• Feeling accomplished running a 5K and reaching my fundraising goal

• Sledding on a beautiful winter day as a 50 year old

• Sedona moments looking up at the red rocks or enjoying Oak Creek

• Making my sister laugh

• Special times with friends

• Enjoying ice cream or a super good chocolate chip cookie

• Time pondering life’s important questions like: What is the best dessert?

My anchor moments take me away, if only briefly. I need to live in the present. There are plenty horrid memories that creep into my now. I can allow myself to bring up happier times. Favorite times remind me of what helps me feel good. They connect me to somewhere safe, happy, and hopeful. Some moments are anchored to my time before cancer. Some are when I have cancer. Cancer is my reality, so I need to identify favorite moments that exist now, too.

Our memories are based on our experiences. I want to have as many fulfilling experiences as I can. These experiences don’t have to be monumental. Sometimes the smaller events carry a bigger meaning than huge ones. My list above goes on and on. I can bring up the anchor moment I need to fit wherever I find myself struggling.

This past weekend I spent time up north in a beautiful area called Door County. It’s located on Wisconsin’s penninsula where Green Bay and Lake Michigan surround it. Most of the towns along the water have marinas filled with speedboats, simple fishing boats, sailboats, and some small yacht vessels. Being on the water is big up there. Looking at the boats anchored on the water reminded me a lot about life. We dock when we need to come ashore. We drop anchor when we want to stop and savor the moment. We sail on when we are ready.

Sailboats anchored off the town Fish Creek.

I’d love to hear what you consider anchor moments.

Off Roading

When I went off roading in Sedona, I went for a rugged adventure. I wanted to experience something new I hadn’t done before. It was an opportunity to see things that I would be unable to see on my own. I had no idea that there would be a cancer connection.

Off roading and cancer were two things that were simply too far apart to be connected.

I didn’t think about cancer at all on my Pink Jeep Tour. Bouncing around as the jeep hit every bump and rock possible while taking in all the scenery was all I could manage. Distractions from metastatic breast cancer are rare for me. The connections between the two hit me after I returned home.

Off roading is quite a metaphor for cancer.

Both take you off the main road you found yourself on that was a smooth and comfortable ride.  Suddenly, the smooth paved road has disappeared. The navigation system doesn’t work. No signs mark the way to tell you where you are. It is unknown territory. To maneuver on this terrain takes skill. The big difference is off roading is fun and cancer is not.

Some refer to cancer as a bump in the road. This may be a fitting description for early stage cancer where treatment is successful and cancer doesn’t return. Metastatic cancer is an unpaved road made of mainly rocks that cause THOUSANDS of bumps. They appear as soon as the road changes from asphalt to dirt and rocks. One jolt is met with another, and then another, followed by countless more. They come rapidly like bullets out of a gun.

There was even a highlight of the tour that was called the staircase of no return where the jeep lurched and jerked down a slope made of rocks that resembled a staircase. Those of us with metastatic disease travel these bumps. We passed the point of no return when we were diagnosed.

The guide described the tour being like a roller coaster. A roller coaster fits my life, too. Up, down, upside down, lightning speed, and filled with twists and turns. Metastatic cancer is like a runaway rollercoaster in the mountains filled with precarious dangers like cliffs, avalanches, and a vicious wild animal or two. You can’t get off it. The topsy-turvy ride is over if you do.

He went on to share with the group how he was trained. It appeared like he was driving with no plan over the course of our 3-hour tour. However, part of his training was to make sure the tires hit exact markers to keep everyone safe. I’ve connected this to precision medicine and targeted treatments. His comments have also made me think about how my decisions matter. Like those tire tracks, I have to make sure I hit things at exactly the right angles at the right moment. And I have no control. I can’t control what my oncologist will say, or test results, or research. I’m trying to drive my own off-road vehicle without training. I’m self-taught and feel I have a certain level of expertise, but man, I wish I knew how to be a better driver on this bumpy road.

The tour was remarkable in the unparalleled beauty it revealed and what it taught me about life that has nothing to do with cancer. Maybe it does.

I was reminded what it felt like to feel free.

To celebrate life.

To continue to find meaning.

I rediscovered how important it is to know my worth. I am worth a lot. Confidence was gained every day I hiked. I began my vacation being unsure about my steps and gradually I found myself more decisive on where I placed my foot. I made very tiny leaps from one rock to another. Reminders to live in the moment and live fully are welcome.

I want to share one final thought on the agave plant. It has nothing to do with tequila. The agave has a life span of 20-25 years and it blooms only once in its life. It sprouts a tall stalk over 6 feet that resembles an asparagus stalk when it is near the end of its life. This can grow 3 to 8 inches a day when it gets ready to bloom. The blossoms are yellow and then they turn red. They bloom and the plant is said to be most beautiful at the end of its life. I find that deeply sad. The rest of our group seemed to find it oddly beautiful. I refuse to draw parallels to human life, to my life. It doesn’t make sense to me that something that has taken so long to shine only lasts a few days.

And yet I can’t help it. Since I look for meaning in things, I wonder what I am meant to know from the agave. A lot of goodness, joy, and success has come my way over the past couple of years. I’ve always been a late bloomer. Is this it?

No, I am not an agave plant. I’ve bloomed more than once.

Beauty blooms and thrives in inhospitable conditions. It can sprout up from cracks in rocks, tolerate insufferable heat, and grow without rain. I can relate. I stay alive even with cancer. I shall continue to bloom like a rare rose, a wildflower, or even a desert cactus.

The off roading adventure was beyond bumpy. It was also healing. I saw scenery I would have no other way of seeing. I discovered an uncrowded spot to watch the sunset that was easily accessible. It was healing by going and getting away from my life here. Sadly, the vortexes did not have the healing power I hoped. Maybe I’m a fool for hoping they would. Stranger things have happened. Inexplicable natural phenomenon rests solidly in that category. So many cancer things don’t make sense to me anyway.

I’ll take every bit of hope I can get on this bumpy road.

B Positive

B Positive is a CBS sit-com about a therapist who needs a kidney donor and is looking for a match. He can’t find one within his family to match his B-positive blood type. A woman he once knew offers him one of hers and is a match. The series gives a glimpse into the life of someone waiting for a transplant while still portraying someone living a normal and crazy life. The show brings visibility to hard things through humor.

Could a similar comedy work with metastatic breast cancer as the sometimes background/sometimes foreground subject matter? I’ve learned things about transplants that I didn’t know before I started watching B Positive. It’s been an educational tool like I imagine a breast cancer “comedy” being. Comedy isn’t the right word because there’s nothing funny about any cancer. I don’t know what the right words would be.

A serious comedy?

I know I’ve had my moments where I’ve come home from an oncology appointment with some doubt that it was me in the exam room. Once I asked an oncologist to look harder at one of my nipples. Honestly, who does that? A closer look was taken. All was fine. Another time I had an enlightening conversation about discomfort “down there,” my vagina, and vaginal dryness. I assured him I didn’t want him to check it out. He thought for a moment and shot back about how estrogen deprived I was. Suddenly, it all made perfect sense. We moved back to discussing the upper half of my body. I daresay these visits are comedy gold packed with meaningful content.

Uncomfortable humor is always hilarious to people not experiencing it.

What other meaningful content could be balanced with comedy? Here are a few ideas:

• Diagnosis

• Hope

• Fear

•  Pinkwashing

• October (We Are Aware) Awareness Month

• Identity

• Comments

• Clinical Trials

• Research

• Chemotherapy

• Hair

• Side Effects

• Battling, Fighting, Losing the Battle/Fight

• Scanxiety

• Life

• Success

• Family and Friend Issues

• Loss

• Day-to-Day Life

• Working and Treatment

• Relationships

• Positivity

• Early and Late Stage Perspectives

• Kale

Death of course would need to be addressed. I don’t think death is funny so I’m not including it in the list to balance with comedy.

I don’t know how any of this would work.

I don’t know if it could work.

Viewers could get a glimpse into MBC. Would it be hard? Yes. Would it be done correctly? I have no idea. It bothers me enough now when commercials for medication intended for thrivers are shown and no one is wearing a bandana or having any difficulty at all. Other characters on TV or in books don’t meet my expectations either. They either die such a painful death that another character is affected more, or they are portrayed as achieving goals that are pretty unreasonable.

What would this amazing show be called? Comments about breasts that are off the cuff or meant to be cute, funny, or sexy are instead incredibly offensive. Breasts and boobs should be removed from the title. Nor should the title be scary. It is a comedy even if it contains serious subject matter. One of my friends calls herself Meta Martha. A title like this would be short, sweet, and to the point. I’m already using it as a working title. Or perhaps just Mets. It could be mistaken as a sports show and pull in more male viewers.

B Positive is a title that carries two meanings. There is the reference to the main character Drew’s blood type of B+ that he needs to match for a successful kidney transplant. The other meaning is to be positive with whatever life throws at you. I’m on board with positivity (usually). Positivity is a feel good energy. Positive people attract like-minded individuals with similar energy. I feel better when I am positive. I am often described as positive. All good.

And yet, it takes more than “being positive” to “beat” metastatic breast cancer. Someone I hadn’t seen in years told me of someone she knew who had Stage IV cancer and now didn’t have it anymore. She was treated at Carbone as I am and had chosen western medicine to treat the cancer. Skeptical, I asked for her to share a bit more about this woman’s story. Positivity was the instant answer. Positivity cured her. It certainly could have helped, however, it isn’t measurable. It is better than negativity. I figured there was more to this story but didn’t ask. I changed the subject. Later, this friend also shared her daughter (whom I taught) cried when she heard I got sick years ago. She asked about my support network and offered help with meals, driving, or whatever. Both were unexpected comments that touched me. Empathy and kindness may need to replace the be positive slogan.

Hospitals promote programs and research while treating cancer. Reputable foundations and charities don’t get the exposure they deserve. News stories are often missing important information. Celebrity deaths bring temporary attention. Celebrity survivors don’t help much. They beat it after all. All of these combined haven’t brought information and a sense of urgency to people who aren’t affected personally. If you haven’t been personally affected, the cause isn’t as urgent.

TV shows have nationwide exposure and massive audiences.

Metastatic breast cancer needs that kind of exposure.

Maybe I need to write a pilot.

Martha, what do you think?

Liar, Liar, Pants on Fire

I was an honest person until diagnosed with cancer. It was my private business. Business that would become public when I needed to take off time from teaching. People would know when they’d see me going about life wearing a wrap on my head when bald. I chose to keep my Stage IV de novo diagnosis quiet for years as it was my choice. Only a few close friends knew, and my mother and sister, along with to whomever they may have blabbed. Why? I wanted to work and be assessed like everyone else. I didn’t want to appear limited. I didn’t need others taking up the slack for me. I certainly didn’t need pity, whispers, or in-my-face questions. One dear friend suggested I would have had even more support and seen more truly good people in my life if I shared from the start. She is probably right.

I chose to lie.

I’ve had lots of practice over the years. I lie easily and I’m a good liar. I’ve done it when I don’t want to talk about cancer and myself. Chances are I’ve lied to you at some point. If you’re nosey and intrusive, I’m not sorry. If you’re my friend, I am sorry. The truth is painful for me and I need to decide what I want to share about myself and when.

I can honestly tell you I will do it again.

I’ve held some medication back when hospitalized a few years ago because I knew they (nurses because of hospital rules) were going to take it away from me. I needed it. In the end, I didn’t take it and understood why it was important not to, but I did lie and even schemed to keep some of it. Truth be told, I believe they lied to me about being able to have access to it when I needed it. If it was to be denied, then I would be denied.

I haven’t been forthcoming (I lied) about the severity of side effects to my oncologists. This isn’t that uncommon. If a drug is working, having the dose reduced or switching to something else isn’t an option that I feel I can risk. I’ve learned where the line is of tolerable pain and too much pain and try not to use language that indicates the latter. Now, this isn’t particularly helpful because side effects need to be documented so patients are believed when they report them.

I am trying to reform.

This next tidbit has been a secret only a few have known until now. There were restrictions where patients were allowed to be when I spent time in the hospital a few months ago. Cancer patients had to stay in the cancer area, which was made even smaller due to the wing where patients were most compromised due to transfusions. To get my 30 minutes of walking in per day involved a lot of repetitive back and forth that rather annoyed me and made me feel stupid. I (somewhat) jokingly texted with a friend that I was thinking of hopping on the elevator I located and giving myself a wider territory. A conversational orderly told me the elevators could take me anywhere in the hospital when I asked. I thanked him. Perhaps I’d even escape, yet this was the coldest weekend in Wisconsin all winter. I wouldn’t get far. I opted against it because it really wasn’t in my best interest to put myself in unsterile areas.

Technically, these elevators were just outside where I was allowed to be.

However, the B6 stairwell was well within the oncology section of the hospital. I had walked by it probably a hundred times when it occurred to me this would be a perfect place to walk. I probably wouldn’t see anyone. It wasn’t a main stairwell. I could climb stairs up and down without holding onto the rail. At this point, I had been unhooked from the IV machine for a couple of hours each day and I was free. I’d keep my mask on because I wasn’t throwing all caution to the wind. So, I walked along the hospital corridor like I was minding my own business. I checked ahead of me and behind to make sure there were no personnel or any patients around.

Into the stairwell I darted.

It was wonderful. Up and down I went to my heart’s content. When I felt satisfied that I had done some good repetitive climbing, I instinctively stood inside the stairwell listening for noises like footsteps or voices. My behavior alarmed me only slightly with the realization I had some makings of a criminal inside me.

I’d do it again.

In fact, I did the next day.

Was this lying or cheating? I would argue I stayed within my area. By entering into the stairwell that was in my area, I was merely extending my designated space.

I also have some makings of a lawyer. I’d credit my years as a teacher where many a student impressed me and taught me how to break rules later in life. It was pretty easy get confessions and disprove their stories. They always left clues. I’m careful I cover my tracks.

Yes, cancer has turned me into a liar. As I mentioned, I’ve done it for self-preservation. The lies are part of the invisible wall I sometimes need around me to keep myself emotionally safe. I also learned other things over time. I’ve discovered that no one really cares what I do. No one is watching that closely. I could get away with an awful lot if I had a devious nature.

The question isn’t who is going to let me; it’s who is going to stop me.

Ayn Rand

I operate from this quote often because I’m sick of things being ripped from me because of cancer. If I have a plan and can present myself well, permission is secondary. I can think of one example where I was told I couldn’t pursue a fundraiser I had planned. Not accepting this as the final answer, I tweaked the plan and reworded a few things so it could move forward.

Ayn Rand’s quote has given me courage to move like I know what I’m doing even when I don’t. (Living with cancer presents this opportunity often.) My college roommate came up for a visit a few years ago and we wanted to visit our former dorm. It was closed for summer and being used to host those staying for conferences. Why couldn’t we appear to be someone who belonged? We needed to walk in like we belonged there and knew where we were heading, while avoiding eye contact with anyone at the front desk. Doors and elevators were locked but we were able to talk our way in by pleading our case to an empathetic custodian.

And again, when it comes right down to it, no one cares what I do. I don’t draw attention. If I’m under the radar and get my way, I still get my way. If a lie has saved me from tears or a conversation I don’t want to have, so be it. To my credit, I haven’t told any huge whoppers.

I’m not under oath to tell the whole truth and nothing but the truth.

I’m not even on trial.

And that’s the truth.

So help me God.

More Vortex Lessons

The Airport Vortex is where the energy affected me the strongest on my recent trip to Sedona.

Everything started off as planned. I was thrilled that the hike sloped downward and the steps weren’t too difficult. I felt waves of gratitude that I wouldn’t have to climb up them. This was a loop route. Long, but a loop.

One of the rules established from day one of hiking was that breaks were good. We took breaks often to recover and press on. One of these breaks was at a spot overlooking Sedona and the rocks as far as the eye could see. I noticed it looked like people sat above us on a rock formation to our right. I wondered if that could be the vortex and strolled over to read some signage before the climb. I didn’t see anything about the vortex.

Whoosh!

I was hit by sudden dizziness. Out of the blue. It only lasted for a moment, yet it shook my confidence. Was this the energy effect again? Why did I seem to experience these unsettling feelings rather than the euphoric tingling and wellness others had described? Hmmph. Seemed typical for me. I sat down at the overlook and nonchalantly got out my Gatorade.

Karil was ready to move on. We’ve been friends since 4th grade. I was not quite recovered and had to tell her I felt momentarily dizzy. I wondered if it was energetic. We chatted a bit with other hikers and learned the summit to the vortex was where we thought it might be. I was sure I could make it.

Off we went.

It was a short, steep climb. Ropes were secured to the sides to define a safe route. They came in handy to hold as you climbed. The last twenty feet or so consisted of one of those one way fairly narrow ascents. I announced I was lying down when I got to the top.

And so I did.

There I stayed. Opening my heart to the energy. Recharging my soul.

I recited my affirmations and prayed. My heart rate lowered 25-30 points. It felt good. No big whoosh of energy. I felt perfectly healthy on the summit. Fully alive.

Alas, all good things must come to an end. We decided we were ready to head back to the car which meant we had to climb up those rock steps I earlier had been so erroneously grateful to not have to climb up. Two breaks were taken quickly. Because of me. On the second one, I desperately looked for someplace to sit. I felt nauseous. I was on the edge of spontaneously sobbing. Energy worked viciously through me. Out with the bad, in with the good.

Backtrack to earlier in the week. Karil had shared a decision she may make where she was worried how she might be affected by someone’s reaction.

Backtrack farther. My fitness coach has often asked me a simple question when things get too hard for me. She asks, “So what?” So what if I can’t run like I want? So what if I can’t lift as much as I have before? So what if I’m not exactly where I want to be? The question all comes down to the narrative I tell myself (I’ve failed. I’m not good enough. I’m a wimp.) versus what it really means (I’m dealing with effects from cancer treatments. It isn’t a defining event. I can do many other things.).

I gave Karil a “So what?” scenario for her situation earlier in the week. It stayed on her mind.

She chose this moment to throw the question back to me.

So what if I couldn’t make it back to the car?

I could go back down to the bottom of the trail where there were a couple of prized parking spots off the road. She’d finish the climb and pick me up on her way down the road.

Ugh. I wanted to make it up the trail. It’s what I planned to do. Goals are to be met. Nothing else is acceptable. I’m a wimp if I can’t do it. That’s the narrative that ran through my mind. What did it really mean? Nothing. Completing the path up was not mandatory. I had another choice.

I told her I would take her offer.

Down I went. In minutes I was sitting in the shade depleting all my fluids I brought with me. Hydrating was a major priority on this vacation. I couldn’t get enough to drink for the rest of the day.

Part of me still wanted to make it back to the car. As close to losing it as I was, I recognized this was a teaching opportunity where I could lead by example. The teacher in me continues to live. It was also an excellent opportunity for me to practice what I preach.

Obviously, I need to be more careful what I preach.

Some people apparently listen.

For about two hours after this, my left eye burned, and my left nostril couldn’t stop dripping. My left side just felt watery. I took two recovery naps that afternoon. And I kept hydrating. Then all was well again. It was a strange reaction that I can’t attribute to anything. Oddly, it was my right side that felt a pulling a few days earlier on the Boynton Canyon hike.

Lessons from the Airport Vortex affirmed the following:

  1. I’m not in as good as shape as I wanted, but I still showed up. I will always do my best to show up.
  2. Although I didn’t take a poll at the vortex, the chances are pretty darn good I was the only one climbing that day with active cancer. That isn’t a small feat. It takes determination, a strong stubborn disposition, and stupidity. Forget that last thing. I’m proud of what I accomplish.
  3. The narrative I tell myself and what is really true is a work in progress for me.
  4. Energy doesn’t have to be understood to have an effect.
  5. I am infinitesimally small compared to the vast grandeur around me, but I am connected to that grandeur. We all are.

Epic vacations don’t come along often. The location, the scenery, and the hiking made this vacation unlike any other I’ve taken. It may sound like it was a lot of physical exertion. I would call it an active vacation. Nature is where I feel happy. It was in the 90s most afternoons. We hiked early in the morning. It still got warm, but Arizona’s dry heat feels cooler than Wisconsin’s humidity. Experiencing all of this with metastatic breast cancer makes it all the more special for me. Life is good.

Messages From Dad

I miss both of my parents every day. My dad died 25 years ago; my mom has been gone 8 years. Twenty-five years is a long time. I was able to make 17 more years of memories with my mom. Memories with my dad haven’t faded so much as they are farther back. More effort is required to revisit them.

I have hit the age where more people in my age group have lost a parent. We share our hurt. I also know people who have both parents still living and they don’t see or talk to them very often. I don’t wish them ill will. I’m thrilled they are still alive. It’s wonderful these friends and acquaintances don’t know the searing pain of losing a parent. They don’t live with grief that runs deep and long. But still, I feel it’s unfair that I’ve lost both. My parents were older. They developed health problems. They died. We all know life isn’t fair.

A while back, I was wishing for something from my dad. My mom pops up often in dreams and waking memories. I don’t get a lot of that from my dad. Time passed factors into it. I put it out there that I wanted to hear from him. In dreams, or signs, or messages, or something. Anything. I miss him a great deal. I don’t think it’s said enough how much adults still need parental love.

One of my routines before crawling into bed is to read for a few minutes. I settled one night into an oak rocker in my bedroom that I picked up at an estate sale. It’s solidly made and has a simple patterned upholstered seat and back. Soft lighting provided by a Tiffany like lamp with shades of blues and greens lit the corner of my bedroom. I rocked gently and read.

At one point, I turned my head to the left toward the table where the lamp sat.

And there he was.

.

.

.

Not as a ghost, hallucination, or in any human form. I saw his handwriting poking out from a small stack of treasures that has sat there between five to ten years.

It had been there every night. His handwriting jumped out this night when I needed a sign.

It was a 3 x 5 notecard that had completely browned over time. My father served in WWII. This could have fit in his wallet but I’m not sure it did because it wasn’t bent. If not in his wallet, it was likely in a desk drawer or the top drawer in the chest where a lot of papers and some jewelry were kept. I’m not sure where I discovered it. I felt it was important and I took it. Clearly, I also forgot about it, but here it was to remind me when I needed it. It was one of those moments mixed with smiles and a slow but steady flow of tears. He had copied a quote from Winston Churchill about wartime living on the notecard.

I pulled the notecard out with my thumb and index finger like one would in a magic trick where you picked any card from cards splayed in front of you like a fan. I read it slowly as if it were a riddle, for that was what it felt to me. The word defiance hit me stronger than the others. I don’t want to dwell in the battle imagery that many who live with cancer use and just as many find cringeworthy. But hey, there it was staring at me in the face. These words were about war, not cancer. Exceptions must be made. If anyone has applied them to cancer, it’s me.

Allow me to say I don’t feel I am in defeat. I feel beat up. I feel constantly up against some stupid cancer or noncancer thing. I feel like I can’t get through to the very people working to keep me alive. I feel exhausted and that I never can catch a break. I feel defiant though and unwilling to give an inch more to cancer.

As far as the other words are concerned, I’m always searching for resolution. Mainly, I search at my oncology appointments through time with my oncologist and all the tests and treatments I do. But I look for answers in so many places. I read articles. I follow leads on the internet. I make note of studies others are in that may be of some benefit to me. There are group chats. I talk to and message friends. Virtual conferences are attended such as the SABCS (San Antonio Breast Cancer Symposium) and LBBC (Living Beyond Breast Cancer). Occasionally, I’ll listen to a podcast. To be honest, it all overwhelms me. My days can’t be only about metastatic breast cancer.

Magnanimity and good will are always good guiding words. Generosity and compassion should never be overlooked. We need both in our world now more than ever.

I set the card back on the side table and shuffled through what else was in the small stack. There was a prayer book with a daily reflection I’d given my mom one year for her birthday. I found some of my dad’s business cards and his resumé. There is a grief journal I started after my mom died. The journal deserves a separate post of its own.

I also found the last birthday card I gave my dad along with more of those smiles and loving tears.

The middle section jumped out to me where it read he knew in his heart that I’d find a way. I realize I chose the card, but it was chosen based on who he was. I always knew my dad’s belief in me was present and constant whether whatever I did was big or small. I’m sure it’s why I chose this particular card. He knew I’d do well on tests. He thought it was great I played tennis. He supported all my band activities. He happily shuttled me back and forth from college to home on weekends. My dad knew I’d find a way. As evidenced on this card, even as a young adult the idea of finding a way was developing, perhaps just a seed of the oak tree pictured on the card. I would have to find my way a lot sooner without him.

A few weeks later he came to me again, this time in a dream. I was at my grandma’s farmhouse in the kitchen, milling around where the cookie jar was kept. Ah, that cookie jar. My grandma, mom, and dad were all in the dining room. Dad called for me to come into the living room. As I got closer to the adjoining doorway, everything went bright white and I couldn’t see. I knew my dad was going to hug me. I kept inching forward into the blinding light. Eventually, I shuffled into him and we hugged. I felt warm all over and felt a tight squeeze of his arms around me. I couldn’t see anything. Then I was jolted awake. I always wake up too soon. I am convinced it was a real hug from him. Make of that what you will.

I got my sign, my message, my something. I received several. Thanks, Dad.

You are there for me.

Always.

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.

Phase of Treatment: Angry

Prepare to read a brief rant.

Every day there is something that pisses me off. One day it was fishing from a friend whether there was anything I wanted to share with her. No. The next day, it was my office visit that needed to be documented before I start a new treatment which is also a trial. It was mainly okay. There was a little burning when one of the phlebotomists stabbed me for labs. I had to drive back to the hospital for the drug drop off to pick up my new meds. They weren’t going to arrive in the mail that day as planned. I didn’t want to wait yet another day to start. I’m close so it’s convenient.

Yet, there are quite a few days I’d like to throttle someone. There are days I struggle.

I also hopped onto MyChart to see what had been decided on changing some nausea meds since my beloved ondansetron may conflict with my new treatment. I clicked on the tab to read my visit notes. There was a new word next to the heading that reads Phase of Treatment – Palliative.

WHAT?

I looked back at other visit notes and the treatment name was actually listed. The time before this the words “deciding what’s next” was written.

Palliative makes me angry. I know it is supportive care for a patient at any stage of illness. It is not end of life care even though many people use the two interchangeably. Hospice is end of life care and can include palliative care.

BUT WHAT THE HECK?

First of all, this change was never discussed with me. Since I am the patient and I matter, having a conversation about a change in terminology would have been appropriate, maybe even required. I could have opposed it from the start. Secondly, there is nothing palliative that I am being offered at my cancer center. Nothing. I have been in charge of all of my supportive care myself. This has included massage, acupuncture, sauna, working with a fitness coach, therapy, Reiki, spiritual work, supplements, and other supportive care. Even the cold capping had been my responsibility. I paid for it. I brought the cap and my supplies. They operated the machine.

If anything, I have felt at times unsupported with recent developments.

I think ANGRY would be the current best descriptor to go next to phase of treatment.

I replied through MyChart to my NP with whom I had my visit.

I asked in writing it be removed.

This is part of my medical record and it’s false. I am receiving treatment. They haven’t provided anything palliative. I don’t want someone unfamiliar to read it and make assumptions about where I am in my experience that could cause them not to offer me something or cause me not to qualify for something down the road. If it isn’t removed, a call to Patient Services may be warranted.

Let me be clear that there is nothing wrong with the term palliative. It can provide a lot of needed support and services. My beef is I am in charge of my own care and fully independent. My cancer center does not get to assign this term to me, particularly when they haven’t provided any related support and services.

So what happened?

I received a call this morning from my NP. We talked about a new nausea med I would try. Then we got around to the whole palliative issue. There is a new template in place for notes. One of the changes are boxes that are checked to describe the phase of treatment. Here are the choices:

Adjuvant

Neoadjuvant

Observational surveillance  (when no other treatment is available or chosen)

Palliative

Other

I explained all my reasons I wrote about above and spoke my mind. She explained the choices of boxes. Palliative means “active treatment for metastatic disease” in their world. This differs massively from the supportive care definition. She said others reviewing my records from different treatment facilities would know what it meant and it wouldn’t exclude me from a trial or other treatment down the road. I don’t think either of us can know that for sure.

I said I’d be more comfortable with “other,” but it isn’t being changed. I will hold off on Patient Services because in the grand scheme of things this may be a small deal rather than a big deal. Being identified as “other” may raise more red flags. I believe I won’t be the only one asking why their treatment is being labeled as palliative. Perhaps a box specific for MBC is needed.

I have my answer. My brief rant is done.

What does palliative mean to you?

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.