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.

More Thoughts on Identity

There are plenty of labels and titles used to assign and confuse our sense of identity. Male, female, husband, wife, widow, single, married, father, mother, childless, son, daughter, brother, sister, only child, and friend. Adjectives also serve this purpose. Beautiful, plain, ugly, happy, sad, funny, depressed, selfish, and giving. Jobs and careers do the same. Perceptions of illness and wellness are also part of the picture. I live with words like patient, survivor, thriver, lifer, metavivor, warrior, and numerous others.

Interests and beliefs both differentiate the narrow scope of labels and titles. Here true identity may lie if you are lucky enough to truly “Know Thyself.” Learning and teaching are two of my core beliefs and huge interest areas. I love reading, writing, and thinking. My interests branch out to other areas. I feel good when I exercise. Listening to Bon Jovi makes me feel just as good as John Denver folk songs. I am interested in nature photography and hiking outdoors. I love time with my friends and family. A good chocolate dessert or caramel is savored.

Identity must be a combination of all these things combined, each like a piece in a jigsaw puzzle. A puzzle really takes on many aspects of the self. Neither is complete without all the pieces. Woe to the puzzle doer to near the end of a puzzle and realize a piece is missing. You know what that piece is and how it will complete the picture, but it still isn’t the same. It’s almost complete, or as complete as it can be, but it just isn’t the same as irrefutably complete, done, and finished. It is very troubling when a person’s identity is missing a piece or two from the puzzle. It may seem obvious what piece is needed to go into the empty space, but everyone still wants to find it to finish the puzzle and make it whole before moving on to the next puzzle.

Maybe we even have a tough time seeing our true selves. It all gets very muddled. Someone else cannot tell you who you are. Identity, strength, and happiness are all inside jobs. It’s very challenging because so many outside factors influence who we are. Those labels, socioeconomic status, who we know, where we live, and even ancestry all are puzzle pieces.

It’s with friends that none of these other definers really matter. People do not say so and so is my friend because they were really good at self-care, took remarkable pictures, or could fix a flat tire. My friends are my friends because of a shared past and the similar interests and values we still share today and hopefully will share well into our futures. We laugh, we help one another, and we are just there to support one another. These are the qualities that transcend all the names, titles, adjectives, actions, and changes over time. Your true inner qualities always remain.

I can’t fix a flat. I hope that admission hasn’t cost me any friendships.

Back to the question, Who AM I? The AM changes over time. Just as the land changes over time, so do we. The Grand Canyon in its infancy was not a canyon at all but instead the great Colorado River flowing southward through Arizona. It is really an awesome feat in physiology how humans change from infants, to children, then young adults, and then through so many different stages of adulthood. And that’s only on the outside.

Thoughts, words, actions, core beliefs, and values all converge together in the I AM. I AM giving. I AM a reader, writer, and thinker. I AM a storyteller. I AM someone who enjoys the outdoors. I AM someone who enjoys the indoors, too. I AM someone who likes to laugh.

I AM loved.

I AM me.

I wrote an I AM poem back in 2012 and posted it back in May, Ideas definitely revolve around identity. You can read it here.

Living as someone with metastatic breast cancer is only one way I continue to define myself, but I don’t want that to be the first thing that people notice about me. An illness shouldn’t define anyone. Others can’t define you in terms of an illness. Unfortunately, illness seems to be the domino poised to cause others to fall.

Figuring out who I am as I navigate identity amidst medical treatments and side effects seems like a never-ending onion where a new layer is continually being peeled back and makes me cry. What doesn’t change is that I am always whole. What if instead of an onion being peeled, I was a tree that kept adding ring after ring with each passing year that told my story? I see a strong mighty oak firmly rooted in the earth that is solid and has witnessed much. Older but wiser. Unflappable. Still there. Bigger. Changes are inevitable, but I choose to see myself as whole and complete with whatever changes that life brings my identity.

There is a Quaker wisdom to “Let your life speak.” It means to let your highest truths and values guide your choices. Who I am lies in my truths and choices that begin as thoughts and materialize as actions. Love, joy, kindness, and making a difference is who I am, and who I will always be. My life will continue to speak.

Cancer – A Master Thief

The Wizard of Oz is my favorite movie of all time. Dorothy believes the world that is somewhere over the rainbow is such a happy place where all is perfect and well. There are no worries or fears. Troubles melt like lemon drops. The song says so. Everyone’s dreams come true and undoubtedly you are who you see yourself as being. Back on solid ground, life is not the same. Birds fly over the rainbow and we long for the ability to fly. The song says that, too. Dorothy discovers that over the rainbow isn’t all she thought it would be, but she learns a lot while she is there.

Oz certainly isn’t Kansas anymore. All isn’t perfect there any more than it is in our realities. Once someone hears the word cancer, Kansas and anywhere else has changed forever. The twister destroys and maims like cancer. It doesn’t care who you are and doesn’t explain why one home is left unscathed and another is completely gone. Oddly enough though, it’s the twister that is the impetus for change and transformation. It took her to the beginning of the yellow brick road. It made it possible for Dorothy to discover her truth and strength.

The tornado is a defining moment where everything changes.

Cancer is a defining moment.

While Dorothy is in Oz, she learns that she was whole and loved in Kansas. I can identify with Dorothy. I think we all can.

Feeling whole is harder when life presents so many lessons in loss.

The grass is always greener. What I have now that I think sucks will look good next to something that sucks even more later.

Traits of loyalty and determination have been attributed to Dorothy. These are two very fine qualities. She was loyal to her friends and they were to her. She was determined to find her way home in a strange land.

Dorothy returns home as we all do.

The movie is filled with aspects of identity spread across all the characters. Dorothy’s friends in Oz believe they lack qualities that all along they have. The Scarecrow has a brain and has both intelligence and common sense. The Tin Man is caring and compassionate. The Cowardly Lion has courage and might. We are smart and resourceful. We love living and those around us. It is okay to be scared, but each of us does not know the depths of our own inner strength. We have all these positive traits.

It would be far too easy to label The Wicked Witch of the West as fear, or evil, or cancer. She sure is scary and selfish. She is green, the color of envy. As a child, I would cower and hide behind a large upholstered chair as I watched her each year when the movie was aired on TV.

The witch terrified me to my bones. Those. Monkeys. Freaked. Me. Out.

Switch to Elphaba in Wicked and I absolutely love her. She rises and conquers. She is just as green, but now it is beautiful and healing. Her greenness defines her. She has serious challenges. In the end things work out for her (just as they do for Dorothy in the 1939 movie). How I think about the witch depends on the version of the story. It’s a perspective thing.

The business of cancer really screws with identity.

I knew exactly who I was before 2012. I was a successful and established teacher working in a district I loved at a school I loved. I was a devoted daughter and good friend who found joy in helping. I was in the process of becoming an adoptive parent. Joy, joy, joy to me.

Cancer turned all that upside down. I retired. My parents are deceased. No one calls me daughter now. Plans to adopt came to a halt. My life has changed dramatically. I can’t get back the way it used to be. The list of those who help me is longer than those I can help.

Cancer steals identity.

 It steals hair and creates an unrecognizable stranger in the mirror. I used to be unrecognizable to others, too. I could stand right next to someone I knew who hadn’t seen me in a while, and they wouldn’t know me. I was a stranger with straight brown short hair that framed my face. It suited me. Looked natural. Worked out well if I didn’t want to see someone, but I usually did. Usually. When I took off my wig, I became another version of myself that was unrecognizable. Little hair remained, mostly grayish, not enough to be accepted as a cute style that I’d have on purpose. The little I had eventually disappeared. The lack of eyelashes and eyebrows compounded the look. Cancer stole outside and inner identities.

Cancer is a master thief.

I felt the real me disappeared into the past. I didn’t know if I’d ever see her again. I missed her. She has reemerged and I look more like the me I know and love.

But how long will she stay?

Identity isn’t solely based on the way I look. Cancer has messed with my inner self, too. Cancer may be a master thief, but I am the master of my I AM. That’s where I’ll pick up next time. Until then.

“Over The Rainbow”

Somewhere over the rainbow, way up high.
There’s a land that I heard of once in a lullaby.
Somewhere over the rainbow, skies are blue.
And the dreams that you dare to dream really do come true.

Someday I’ll wish upon a star
And wake up where the clouds are far behind me.
Where troubles melt like lemon drops away above the chimney tops,
That’s where you’ll find me.

Somewhere over the rainbow, bluebirds fly.
Birds fly over the rainbow;
Why, then, oh why can’t I?

If happy little bluebirds fly
Beyond the rainbow
Why, oh why can’t I?

I sincerely hope you were humming if not singing. 🎶

Scalp Cooling and Cancer

Using a cold cap marks another first for me.

It’s my third time facing a treatment that has a strong (almost certain) chance of hair loss listed as a side effect. Total hair loss was a sure thing the first time I needed chemo. I went to the salon and had my head shaved. I had a wig but didn’t plan on wearing it. It didn’t look like me, feel like me, and it felt uncomfortable. I felt I retained my identity in a head wrap.

Cold caps at this time were being used in Germany but not in the U.S.

The second time where I was likely to experience hair loss was when new treatment followed oral capecitabine where my hair had already thinned considerably. My next line of treatment was likely to cause me to lose even more. This time around, I looked into cold caps. Some had been FDA approved and were being used in the U.S. I wanted to do it. The more I learned, the less of an option it became. Caps needed to be changed every twenty minutes. You needed someone to help change the caps. It needed to be worn before and after treatment – how long depended on the specific treatment you were receiving. I learned I would need to wear the cap a couple hours prior to and after treatment. I lived alone and I doubted I was going to find anyone who had full days to devote to cap changing. I also learned a person still lost up to half their hair. I didn’t have any more to lose since I already felt I had lost about half from my previous line of treatment. It was too much effort for something that maybe would sort of possibly work hopefully a little bit. I didn’t shave my head. I decided just to let hair fall out if it was going to. Most of it did with effects similar to if I had shaved it. I opted for a wig. I could avoid stares when out in public. It suited me. I felt like me. It was comfortable. I felt more normal and like myself.

I wigged for three years.

I finally had my hair back by last November. I love how it feels. It’s been a beautiful mess during the time quarantining during COVID. I found that ironic that I had all this lovely hair that no one ever saw and I couldn’t get done.

God sure has a sense of humor.

Then came the blow that I needed to change treatments and the best option would probably wipe out my hair for a third time. I didn’t want to see my hair go again. The emotions and tears attached to hair loss are intense. I decided to revisit the cold cap world and was somewhat relieved to learn there is now a machine at my treatment site provided by Paxman Scalp Cooling that a patient pays out of pocket to use. Please note my only connection to the company is as a customer using their product.

Everything is managed while you are on site receiving treatment. Nothing needs to happen at home. You are hooked up to this machine that pumps and keeps the cap cold. A nurse gets you ready, secures the cap, and runs the machine. You eventually take over and get ready on your own.

Why do I write I was only “somewhat” relieved? I still had to willingly freeze my head for a shot at keeping some hair and pay for the privilege of doing so. It still was probably going to thin, but I’d be starting with a full head of hair this time.

I would take a shot.

Cold caps or scalp cooling systems work when the scalp is cooled to reduce the amount of chemotherapy that reaches the hair follicles. The hope is hair may be less likely to fall out if less chemo gets there.

My head isn’t really frozen. The scalp is brought down from around 98.6°F to between 64°-72°F. It wasn’t an all over football Saturday in November kind of cold. It was more of an unnatural numbness of combined cold and heavy sensations that you could still feel. It does get better.

Time is broken down into four parts. There is a 30 minute pre cooling time to get your scalped cooled and ready to receive treatment. Doxil (doxorubicin liposomal) is what I’m getting and that takes 60 minutes to infuse. Then there is a 60 minute post cooling time period. Lastly, you thaw for about 15-20 minutes so hair isn’t ripped out of your head that is frozen to your inner cap when you remove it. It all adds up to just about 3 hours from start to finish.

I hope you agree it doesn’t suit me. I assure you it is not comfortable. I want to keep being the me that I see in the mirror. I’ve been told I look like a pilot or an astronaut of the past. And yes, I know my mask matches my eyes.

What is it like?

It’s rather hilarious the process is called scalp cooling. I think the word cooling is used for some type of psychological effect. The machine was turned on and there is a whoosh of cold filling the cap. Seconds tick by and it indeed gets intensely cold in an instant.

A person is forewarned that the first ten to twenty minutes are the worst. After that, the scalp is numbed enough so it doesn’t feel as cold. I want to be crystal clear on what I feel. Fear fills almost every fiber of my being as I fight through the first ten minutes of each session. I wonder if I can get through this torture I’ve willingly chosen. The feeling of desperation is almost more unbearable than the intense cold. I have fought back tears for the few minutes every time. My tolerance for pain and discomfort is quite high. Living with metastatic breast cancer does that. I can barely keep it together.

But then I acclimate and focus on other distractions to pass my time.

The cold didn’t bother me as much as the tightness and chin strap. The chin strap is the worst part and almost intolerable. The covering worn over the cap must be kept on tightly so that the inner cap stays snug on your scalp. This makes it hard to talk and eat because it’s that tight.

Wearing a mask added another layer to my discomfort.

Feeling a little sick added yet another layer. I was fighting it and waffled back in forth from the root cause of feeling light-headed and woozy. Was it the drug? Was it the cold cap?

Both? Or was it just all in my head?

After I was disconnected from the Paxman cooling machine, there is a thawing out period of around fifteen minutes before the cold cap is removed so your hair isn’t adhered to the cap when taken off. Getting the chin strap released helped a lot.

Nurses are special humans. No ifs, and, or buts about it. I wasn’t feeling so hot after my first session. My lovely nurse gave me a head start to go get the car. Meredith wheeled my carry-on suitcase outside to the drop off lane and waited for me there so I wouldn’t have to lug it all the way to ramp and up flights of stairs. I still had two bags to carry on my own. Scalp cooling requires me to bring much more to my sessions.

How’s the cap working?

I’ve told very few people I’m scalp cooling. I wanted to see what happened. Nor did I see the point of a grand announcement since I don’t go very many places thanks to the pandemic. My new treatment qualifies as one that causes immunosuppression. Even fewer people see me.

I have had two rounds of Doxil (doxorubicin liposomal) so far. Cycle two went more smoothly. I didn’t feel sickish from the drug or the capping experience. Time passed a little more quickly. I am expecting each time to feel easier. I know what to expect and how to manage it all.

Success rates vary with different treatments. Paxman considers the cap successful if you keep 50% or more of your hair. My bar is higher. I want minimal loss with no visible bald spots. I’ve seen many pictures of women with bald spots on their crowns. Seeing these discourages me. Time will tell. Shedding is expected. Lots of shedding apparently.

Shedding is normal. Normal shedding is normal. There is NOTHING normal about chemo. Absolutely nothing. The bald spots on someone’s crown and other places on the head are referred to as shedding. Shedding on chemo goes far beyond normal shedding. A person is bald. My definition differs from Paxman.

Maybe I’m splitting hairs.

When a snake loses its skin, new skin is there to take its place. It’s not even a close call. A snake doesn’t have some bare spots where new skin didn’t develop. Shedding crosses a line quickly with certain chemos and it becomes hair loss. Call it what it is.

I should be wearing a wig or wrap by now if I weren’t scalp cooling. It’s been 45 days since my first cycle with Doxil. My hair doesn’t feel the same or look the same. I can wash it only weekly. There are many cautions against styling it. I am to refrain from getting it colored or cut. I even need to be careful combing it. But I still have it. I will count every day I have it as a win. So far, I’ve experienced minimal hair loss (or ahem, shedding).

I am fed up with accepting hair loss in my life. I’m hoping this third time is the charm and I have found a way to keep it.

If not, you’ll see me sporting a variety of looks and you will know it isn’t working as well as I hoped.

A bit messy, but a realistic look for me. So far, I’m hairy happy with the results.

I AM

I feel like the last few weeks of my life have been incredibly full and jammed packed. Too much is happening all at the same time. It always happens that way, doesn’t it? I haven’t been able to write a new post for today. Instead, I’m posting a poem I wrote about two months after I was diagnosed in 2012. It still rings true for me. It’s still my voice, my heart, and who I am.

In the original version, the font gradually gets larger and larger as the poem continues. I can’t do that the way I want on WordPress.  If read aloud, my voice gets louder and louder in a slow crescendo. That doesn’t work in this format either. Just sayin’.

If I had to add anything new my writing, I would include that I am a badass.

         I AM

I am not cancer.

I am not my hair.

I am not chemo, surgery, or radiation.

I am not my breasts.

I am not a project.

I am not defeatable.

I am not stoppable.

 

I am AMAZING.

I am NURTURING.

I am SUPPORTIVE.

I am SMART.

I am CLEVER.

I am DETERMINED.

I am POWERFUL.

I am a WINNER.

I am BEAUTIFUL.

I am LOVELY.

I am SEXY.

I am FUNNY.  (Just not at the same time as being sexy. 🤪)

I am FAITHFUL.

I am SPIRITUAL.

I am THOUGHTFUL.

I am UNIQUE.

I am CREATIVE.

I am ORIGINAL.

I am WISE.

I am FUN.

I am SWEET.

I am POSITIVE.

I am UPBEAT.

I am a DAUGHTER.

I am a SISTER.

I am a FRIEND.

I am a TEACHER.

I am a LEARNER.

 

I AM TOUGH.

I AM STRONG.

I AM A FORCE.

I AM A SURVIVOR.

I AM JOY.

I AM LIGHT.

I AM PEACE.

I AM KIND.

I AM LOVED.

I AM GRATEFUL.

I AM BLESSED.

I AM IN LOVE WITH LIFE.

 

Baby Robin Rescue

“There was a baby bird in your tree we took down,” explained the tree man, pointing to the ground at the side of my house. “It’s there in its nest.”

Tucked under the downspout and against the bricks was a nest that held a rather large, fluffy, baby bird.  Its home had vanished into the tree chipper, its mother wouldn’t know where to find it, and night was falling. Thunder grumbled softly and the sky flashed Morse code that a storm was near. Humidity hung in the air, thick and uncomfortably sticky.

“What should I do with it?” I felt I should know but I didn’t.

It was clear the baby was a robin. It’s grayish-brown feathers filled the nest entirely, but it still looked too young to fly. Its little beak opened and closed expecting food.

“You can just leave it there for the night,” said the man. I sensed the attitude was to leave it in nature as close to its original home as possible.

I knew instantly I was not leaving this motherless, little baby robin alone on the ground where it was completely helpless and unprotected. It wouldn’t survive the night. Should I take it inside with me? Was there someplace else I could leave it outside? Even though I hadn’t held the chainsaw, I still had destroyed its home. Mama robin wouldn’t find it.

Ilene is my neighbor who also very conveniently is a vet. She was outside trying to get her lawn mowed before it stormed. Lightning flickered more regularly in the sky. I couldn’t wait much longer. It was getting dark and the baby bird still had nowhere to spend the night.

“Ilene! Do you have a second?” I shouted above the motor and motioned in my direction. She stopped the mower. “I have a baby bird here.”

We talked over the options. No, she could not take it. They didn’t work with rescue animals at her clinic. There was a vet clinic off the beltline on Rimrock Road that was open twenty-four hours and took wild animals. That was a possibility. Finally, we decided it was best to put the bird and its nest cradled on top of an abandoned nest in a bush to the side of my house.  It had a better chance there than on the ground. With flashlight in hand, we safely nestled it in.

My next job was to dig up a couple of worms for it and try to feed it. Sweat rolled down my face and back. I couldn’t see where I was digging.  Multiple holes were appearing in my garden and there was not a worm to be seen. Why was it so hard to find a dang worm? This was crazy. I was crazy.

After about ten minutes I abandoned the worm quest. Plan D was now in motion. I would take the bird to the vet clinic.

Flashlight in hand, I retrieved the baby robin, put it in a box, and placed it on the floor on the passenger side of the car. Tired and sweaty, off I went, hoping the thunderstorm wouldn’t hit until I returned home. My mother’s voice spoke quietly in my head, “Don’t go. Stay in for the night. You’ll get wet.” But my mother wasn’t around anymore. It was just shy of a month since she died, but she was still there chattering away at me.

I didn’t mind.

Keep in mind, I also didn’t listen.

I knew my actions were some type of response to feeling alone and a deep need to fix the unfixable.

Baby bird made some sounds. “Tweet, tweet.” What was it saying? I didn’t speak bird but decided to tweet back anyway. “Tweet, tweet, tweet,” I said.

The sky let loose torrents of water which made it tough to see the road. It was one of those downpours where you feel like you’re continuously under a waterfall and the windshield wipers can’t keep up. All this felt so insane on several levels. Tweeting back to the little bird was somehow comforting.  We tweeted back and forth for the rest of the trip until I found the clinic.

I covered my little bird with my coat and ran the box into the clinic. I suspiciously eyed an orange cat that was sitting on a bench just inside the door licking its paw. A woman at the front desk smiled and took the bird to the back room. That was it, I was done. I headed back out into the stormy night.

When I got back and buckled up in my car, I realized I hadn’t said good-bye to my bird.

Yep, I heard it.

My bird.

Somehow that little animal had become mine in a time span of less than an hour. Maybe it was mine the moment I saw it on the ground . . . I don’t know.  But I did know I had to dash back through the rain into the clinic so I could say good-bye.

I’ve been this way for a long time. I’ve learned to be okay with it.

“I’m back,” I announced as I dripped in front of the receptionist.

Foolishly I added, “I didn’t get to say good-bye to my bird.”

She stared at me for a long moment before disappearing into the back room and returning with the robin.

“Bye, bye,” I said. “Be a good little bird.”

I felt I needed to add a few tweets in there to make sure it understood.  I already felt foolish, so there was no point stopping. “Tweet, tweet . . . tweet, tweet.”

I think it understood.

Somehow, I think my mother did, too.

Top Character Strengths

“Our ability to handle life’s challenges is a measure of our strength of character.” ~ Les Brown

Life is challenging. Some folks seem to have more challenges than others, but we all have challenges. A lot has been thrown at me thus far that I’d rather not have dealt with at all. I’d like to think I have continued to grow for the better through challenging times. Chalk it up to an inherent teacher trait that I always need to learn something from situations, regardless of whether the situations are good or bad. I’ve become more hopeful, determined, and resilient over the past several years. I am grateful for these gifts and the opportunities I have had to use these strengths. These are amazing traits, but I am not sure I would have chosen them as main character strengths before my cancer diagnosis.

I would have put kindness, positivity, and a good sense of humor at the top of my list.

Being kind is what I try to show the world and what I expect from others. Our world needs more kindness. I can find a positive perspective in just about anything. Even if something sucks for me, I recognize it as truth and allow myself to be there for a while. My sense of humor has brought a smile to my face when I’ve needed it.

Not everyone gets my jokes.

How we see ourselves, how others see us, and how we truly are may all be the same or different. It’s natural to see ourselves how we want to be seen. Circumstances factor into how we are seen by others. I believe we are a mix of so many traits that are fluid and dependent on what is needed. My virtuous side may shine in the public eye, but I may need to channel my stealth if I were to plan the next great diamond heist. Luckily, I have more of an attraction to pearls. My theme here today is on character strengths rather than weaknesses, so I’m determined to stay on topic and not focus on unflattering qualities. I have those like we all do.

I stumbled across research on character strengths while doing some reading about happiness. A company that researches character strengths referred people to their website for anyone interested in identifying their top character strengths. The idea is to know your strengths so you can use them effectively. It takes about fifteen minutes to rate yourself on how much you fit various descriptions. Directions include responding to how you feel you are and not how you want to be, although I’m sure there is personal bias involved. How could there not be?

According to their research, they assert that people who use their strengths are 18 times more likely to be flourishing and happier than those who don’t know or use their strengths. Flourishing! I wanted to find out what they deemed my strengths and see if I agreed since I want to flourish as much as possible.

According to results, my top three character strengths are perspective, spirituality, and humor.

Perspective

The ability to see the bigger picture and what is best for a situation was my top strength. I can see the big picture but am also detailed oriented. Some describe this as seeing the forest and the trees. I think being able to think mindfully about situations has helped me consider the advantages and disadvantages of a situation. Having made my share of mistakes and learning from them also has developed a sense of knowing that comes with looking at different viewpoints. Having different ways of looking at the world helps make sense of it.

Seeing alternate points of view is important. I can apply this to my own life in a way where I listen carefully and weigh all possible sides. It’s harder to do when there are heavy health decisions to be made. The best options moving forward may involve hard parts but still be in my best interests. How will treatment options and side effects affect my quality of life? What are the chances of success? Am I a good match for a proposed treatment? Why is it being suggested for me? I make a lot of pro and con lists. I weigh some factors more than others. I look at the facts I have. I consider my feelings. I ask the people I trust for input and their valued perspective.

Careful listening is needed to understand and value perspectives different from yours. Doing research so I can make informed decisions is important to me. Asking questions fits here too. I won’t discount intuition because even after all the research has been gathered and all the questions have been asked, there is a feeling about what the right choice is for me.

Spirituality

Spirituality was my second highest strength. It reflects a sense of meaning and purpose in the universe. It’s a search for the sacred whether that’s secular or nonsecular.

I was surprised this strength ranked so highly. I used to identify very strongly with spiritual ideology and concepts around faith. It’s been shaken. I don’t believe having cancer has shaken it as much as the rigidity of the religion that I’m a member. I question more and I believe questioning is good. I am not going to narrow the sphere of spirituality to religion. Spirit to me has become a much larger force and a person’s chosen religion or choice not to be religious doesn’t determine a person’s faith, spirit, or worth. There is no one way for everyone to be spiritual. We each find our own way.

How can I use spirituality as a strength living with cancer? I know I am more than this body where I currently reside. My views on the afterlife have evolved. I have pondered a great deal about the meaning of life that influence my choices and give me peace. There is some sort of transcendence at work that allows me to connect to something greater. I have a peace journal. I meditate. I pray. I engage in discussions about faith with close friends. I feel a connection to the universe when I’m in nature.

I can still talk to my parents and feel their presence. I talk to God daily. I let myself be quiet and I listen to the stillness.

Humor

I’ve always found situations amusing. Sometimes not at the time, but I could laugh at them later. It seems I can make other people laugh even if it’s not my intention. I will choose a comedy over a drama. Children and their natural shenanigans are gold mines for humor. Stephen Colbert and his writers craft a masterpiece nightly with his monologue that has made the past couple of years more bearable. I have become a fan of good political satire. I love being around people who can make me laugh. It’s a quality I look for in strong relationships.

How can I further use my sense of humor as I live with cancer? It’s very useful in dealing with stressful situations. Cancer is stressful. Seeing the lighter side in a situation reduces stress. A person living with metastatic breast cancer faces a lot of adversity ranging from medical obstacles, social relationships, and navigating through it all off road because it is a wilderness. A good sense of humor has the potential for transforming something negative into something positive because of a shift in perspective. My former oncologist and I had such a good chuckle over a theory a radiologist gave about why I had severe muscle cramping to the point of hospitalization. His theory was I wasn’t moving around enough in the MRI tube. It is just absurd! There isn’t ROOM to move around in there and you need to stay motionless for the imaging to be accurate. The radiologist knows a person can’t move around in there. I shared the story with my oncologist and he said, “What are you supposed to do – jog around in there?” The stupidity behind this utterly false theory is astounding, but the image of jogging in an MRI tube cracks me up every time. Being in good humor doesn’t necessarily mean you are laughing all the time. It’s more of an outlook you carry with you.

How a person handles life’s challenges certainly is an indicator of their character. I will strive to handle mine with a perspective that affords me meaning, a sense of humor, kindness, positivity, and a dash of grace if I can get it.

 

Consider responding:

What do you feel are your top character strengths?

How do you apply your strengths so you flourish and make the most of them?

Click here (viacharacter.org) if you have an interest in completing the survey for yourself to learn about your top character strengths. It’s free to take and get results. I am not affiliated with them in any manner.

Nifty Fifty

Today marks my 100TH post! Numbers are significant in my life. There are lab numbers. Survivorversaries. Birthdays. I remember dates for all sorts of events in my life.

Two numbers of significance in my life are 50 and 50,000.

I will celebrate my 50th birthday in 2020.

Yes, there will be a party.

I am raising $50,000 for metastatic breast cancer research at UW Carbone to celebrate such an important milestone in my life.

Today, I take the opportunity for some self-promotion devoted to achieving my goal. I would call it selfish self-promotion, but that’s only partly true. It’s true I’d love to benefit. The funds raised will all go to research and that hopefully means many will benefit. Most of today’s blog highlights information on my fundraising page. If you haven’t seen it, today’s the day.

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My goal: Raise $50,000 For

Stage IV Breast Cancer Research

To Celebrate My 50th Birthday

 

My Diagnosis

I have been living with cancer ever since my diagnosis on March 14, 2012. Tests, scans, and biopsies were thrown at me one after the other in quick succession to determine what stage was to be attached to my diagnosis. On April 13, 2012, the day I started chemotherapy, I learned I was stage IV.

Facts and Research

Stage IV cancer means cancer has spread, or metastasized, to an area other than the primary site where it originated. Breast cancer that is contained to the breast and is stopped there doesn’t kill people.

Metastatic cancer kills people.

The facts are:

  • 10% of patients already are stage IV upon diagnosis like I was.
  • 30% of earlier stage breast cancer patients will become metastatic.
  • There is no way of knowing whether a patient’s cancer will metastasize.
  • The bulk of breast cancer donations go toward prevention and early-stage research. The percentage of donations going toward MBC research is typically in the single digits . . . unless you know precisely where the money is directed and for what purposes. That leaves too many breast cancer patients feeling isolated, forgotten, or that our lives aren’t worth as much as early-stage lives.

Putting more funds toward research, more treatments, and more options for stage IV lifers benefits ALL breast cancer patients. 100% of donations to Nifty 50 directly benefit metastatic breast cancer research at UW Carbone.

The UW Carbone Cancer Center

Thank goodness for the UW Carbone Cancer Center. The UW Carbone Cancer Center where I receive all my care is one of the top cancer centers in the country and the only comprehensive cancer center in Wisconsin. I know I will always receive quality care and the best treatments available.

Initially, I received 12 cycles of chemotherapy for six months. I took several different anti-cancer and oral chemo pills for several years afterward. For the past three and a half years (and counting) I’ve gone back to more formal chemotherapy treatments and infusions. There have been over one hundred of these. I will have more. I need more.

My Mission

Part of my purpose is to change perceptions on stage IV cancer. People are living longer and stronger with this awful disease thanks to continued advances in cancer research . . . research that must continue.

I have created a space for myself where I focus on living in unrelenting wellness. I do my best to disregard medical timelines and ignore medical statistics. I strive to think outside the medical box and I’ve developed a mindset dedicated toward surviving, thriving, and living well with cancer. I live and lead by example. I work hard to be active whether it’s summer or winter, rain or shine.

My mom passed away from metastatic breast cancer in 2013. She would be very pleased with how well I’m doing today.

I know I will always be in treatment.

When one treatment fails me, I need to move on to another one with the hope it will be more effective and effective for longer.

Research equals hope. Research, however, is extremely expensive.

I am hopeful cancer researchers are on the cusp of making the next great breakthrough in treating, and eventually curing, breast cancer.

I am always hopeful.

Go to my Nifty 50 page to make a secure donation.

DONATE HERE

Thanks so much for your support.

Patients Have Names

I transferred from a smaller cancer clinic setting to a cancer center in a major hospital late last summer. I still believe I am getting excellent medical care.

There are some differences, differences I don’t like. They stem from the sheer newness of my experiences and the size of the cancer center. In time, the newness hopefully will feel more familiar. The gargantuan feel of the hospital maybe will feel smaller as I’ll only go where I need to be.

I’m not so sure about the size. There are two waiting rooms for labs. I’m given a pager that lights up and vibrates when it’s my turn like the ones used in restaurants when your table is ready. Sure, it’s a way to keep things moving quickly and it provides some privacy, but I have a perfectly usable first name. Then I go to another level for the breast center clinic where I wait in another waiting room. After the office visit, I trek upstairs again and get comfortable in a third waiting room where I wait for treatment. I check in at some type of reception area each time. So far, I have had moderate to long waits in each of my waiting rooms with no updates as to how much longer I’ll be waiting. I took my time between waiting rooms two and three last time and went to the germateria for lunch. I still had a good wait when I made it to the last waiting room.

I feel confident about the growing doctor-patient relationship I am developing with my new oncologist. It’s different from the one I had with my former oncologist, but it should be as she is a unique person. Oncologists are not one size fits all just as patients are not.

The treatment area is where I’m identifying more of a repetitive insensitivity issue.

It’s less personal. An identification bracelet is strapped on and it’s scanned to populate my personal information. It beeps. Every time. I hate that bracelet. It’s one of many factors that make me feel like I’m an illness. I will move past it.

I have a name and I’d like for my nurses to use it.

On my first visit there, the nurses noted it was my first treatment so I needed to be watched for a possible allergic reaction. No, it was only my first treatment at that facility. It was my 10th with this protocol and my 109th overall. For whatever reason, this important data wasn’t coming up. It’s a distinction I happen to think is worth knowing and should be correctly documented. Could just be me. Talking to me, bringing the patient’s voice into the discussion provides meaningful, not to mention accurate, information.

I know I have to give up comparing how my new place is different from my old place, but I never had to wear an ID bracelet in the old place. Everyone knew me. They took a genuine interest in me. We knew things about one another’s lives on personal levels. If an appointment needed to be changed, I was called. Here, I get a letter informing me appointments have already been changed without consulting me if the changes work for me.

Patients also have telephones by the way. It’s a good thing I’m not working and have a little more flexibility.

There’s more. Most of the nurses just swing in and out of my treatment cubicle and it’s all business. Some tell me who they are; some do not. Some are friendly; others not so much. I usually have more than just one per visit because they are running around caring for multiple patients at a time. I’ve asked for their names. My bracelet gets scanned and apparently that’s sufficient.

I have a name.

I am more than my ID bracelet. I am not a number. I am not an illness, and I am so much more than a patient. When multiple nurses shuffle in and out, it makes me feel like I’m not assigned to any nurse specifically. I feel like I’m an inanimate object on an assembly line. Truthfully, I feel a little bit that way when I have to visit three different areas on one visit. I feel that way when I’m not consulted about appointment changes. Asking if bigger is better in terms of patient care is a whole other topic.

I have had a couple of very friendly nurses. They visit with me and I do feel like I’m starting to get to know them and build connections. Personal connections and positive relationships make my health care better. I know their names. I recognize them. It helps me feel like I belong. Patients have names and it’s not unreasonable for nurses to use them. I empathize that they are spread thin and have a lot on their plate. I get that a lot is asked of them. I know from visits with my nurse friends at my old place how they are often left out of the loop with decisions that affect them. I know that more and more is being asked of them and that they have to do more with less. I know that some of these decisions don’t put the interests of the patients first. I know they referred to me as family. I felt the same and I miss them. I know all their names (Karen, Sue, the two Brookes, Kari, the two Ambers, Amanda, Sandy, Kay, Kelly, Justin, Nina, and Beth).

Is knowing a patient’s name too much to ask? I don’t think so.

As a teacher, calling a student by their name lets the student know you recognize them, that you care about them and their success, and it fosters a sense of trust. Students feel comfortable and, oh, I don’t know, it has a positive impact on learning. If I were a parent, I would not want my child to have a teacher who didn’t know their name. I would like my nurses to know who I am. I believe being recognized, feeling cared for, and trusting your healthcare providers will have a positive impact on care given and care received.

Going forward, I will be proactive and introduce myself, letting my nurses know that using my name makes me feel valued. I won’t be able to change the three different areas I visit when I’m there. I won’t be able to change how long I wait. I won’t be able to ditch the ID bracelet. I may not even be able to do much about whether nurses take my encouragement to use my name. All I can do is try.

Update: Most of this post was drafted about one month ago. My past two visits have been more positive in terms of my interactions with my treatment nurses. Situations change. I hope mine has changed for the better. I could have chosen not to publish this post, but I went ahead with it because it’s important to remember patients aren’t numbers, or statistics, or are treated like part of the equipment we are hooked up to when receiving treatment. We are people. We have feelings. We have names.

 

Sunshine Blogger Award

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Sunshine is synonymous with warmth. It feels good when it’s carried on a summer breeze. It’s reassuring when it makes a frigid day in winter a few degrees warmer.

And sunshine is pure Vitamin D for the soul when it takes the form of the Sunshine Blogger Award.

It is an honor to be nominated for the Sunshine Blogger Award by fellow blogger Abigail Johnston of No Half Measures. We both live with metastatic breast cancer. A nomination coming from her means a lot because I have admired her work, her strength, and her honesty as I’ve gotten to know her through the bits and pieces of her life she shares.

What is the Sunshine Blogger Award?

The Sunshine Blogger Award is an award of recognition given to bloggers from fellow bloggers. It recognizes those who are creative, positive, and inspiring. It celebrates people who spread sunshine to the blogging community.

What are the Rules?

These are the rules of the Sunshine Blogger Award:

  • Thank the person who nominated you, and provide a link back to their blogging sites.
  • Answer their questions.
  • Nominate up to 11 other bloggers and ask them 11 new questions.
  • Notify the nominees about their nomination via their blog or social media.
  • List the rules and display the Sunshine Blogger Award logo in your post.

My Answers to Abigail’s Questions

What led you to start blogging?

I love many forms of writing. I’ve written poetry, kept personal journals, and worked on picture book manuscripts. I have drafted a book about living with cancer. I brought it to completion and then I took it through more revisions than I could count. The hard part wasn’t writing it. As I began to explore how to publish it and whether to aim for a publisher or go the assisted or self-publishing route, it became clear that I needed to be more visible with whatever choice I chose. Blogging was a good fit for me to do this. It also showed I was serious about my goals and that I saw myself as a writer. What I discovered was it provided me with a way to use my voice very effectively and I enjoyed it. Blogging has made me more confident in other areas not even connected to writing. Blogging has honed my writing skills and I have become a much stronger writer. I have written a wealth of content I didn’t even know was waiting for me. I find the process and result intensely meaningful. I have connected with some amazing people.

Who is/are your childhood hero(s)?

A hero is a person who is admired or idealized for courage, outstanding achievements, or noble qualities. I’m not sure my childhood heroes displayed a lot of courage, noble qualities, or even had outstanding achievements. They were famous because of some quality of being super cool.

Wonder Woman comes to mind because she was independent, strong, fought for good, and was glamorous. She also had the lasso of truth and the invisible jet!

Dorothy Gale from the Wizard of Oz is an unassuming hero. She discovered truth and strength in herself and in friendships. She faced many obstacles and got through all of them.

Wonder Woman and Dorothy are not real. In real life, my grandma was my hero. Every fiber of that woman was good.

Who are the people in your life with the most influence?

Hmmmm . . . this is tough as there are many. I feel my parents still influence me even though they both are deceased. Teachers I have worked with and children I have taught have influenced me in innumerable ways. My dear friends with whom I can confide in and share anything with influence me with their wisdom and support. My fitness coach has changed how I exercise and think about moving and being strong. Undoubtedly, it will sound like I have a very healthy ego, but I would also say I am the person with the most influence in my life. With both of my parents being gone, I’ve grown to understand I am on my own, I am responsible for me, and I have the most invested in my choices and outcomes. No one else should have more power or influence over an individual than the individual.

If you could go back in time to meet one person, who would it be? Why?

My first thought was I’d go back and meet a younger me so I could warn myself that my future held breast cancer and then I could stop it. How? I didn’t do anything to cause it. Science doesn’t have it all figured out. There is no action I could possibly have taken. My second thought was that I’d like to go back in time and meet an ancestor I never knew but who had an impact on influencing the trajectory of my destiny. I believe we are influenced by ancestors we’ve never met because of the effect they had on our parents and grandparents who in turn influenced us.

If you could live anywhere in the world, where would it be and why?

I’m happy where I am. When I’ve entertained thoughts of moving, I think about places in or near a medium-sized city where I can get away easily. I love mountain and forest settings. Perhaps I would wind up near Yellowstone National Park surrounded by blue lakes, wildflower meadows, mountains, and wildlife.

What is your favorite book and why?

My most recent favorite is hands down Where the Crawdads Sing by Delia Owens. It combines a mystery, emotion, an original story, and absolutely beautiful writing. It’s one I want to reread and relish the stellar storytelling again.

What is the most memorable thing about you?

I have no idea. I’ve never had to remember me before. I get a lot of comments about my kind heart. I’ll go with that as my memorable thing.

Look at the most recent picture on your phone and tell us what it is and why you took the picture.

Ugh! It’s a boring photo of a letter from an insurance company. I needed to take it so I could verify payments I made to submit for reimbursements. I wish it could have been more exciting because nature photography is something I enjoy throughout the year.

Dogs or cats? Why?

Dogs. I had always wanted a cat because of all the kittens I played with when up at my grandma’s farm. My sister pushed for a dog. My family got a dog when I was in fourth grade and that was it for me. My heart swelled with love for a sweet little cockapoo who was affectionate, endearing, and a reliable companion.

What was the most difficult conversation you’ve ever had and why?

Health conversations continue to be at the top of my list. The most difficult was not even about me, but with my mom when she was in her final days. There was pain, sadness, and grief.

What one word sums up 2019 so far for you?

HOPE. So many of my thoughts and actions keep coming back to hope I’ve been given, hope I have, and my path not to give up hope.

My nominations for the Sunshine Blogger Award

A lot of bloggers I read already have been nominated for this award. Abigail’s blog is one of my favorites that I look forward to reading. I don’t think there is a rule about only receiving it once, after all, people receive more than one Oscar. I see being nominated more than once as another opportunity to highlight that blogger’s work. However, I also hope to spread the sunshine and warmth to others. Some of my nominations are for bloggers whose work simply makes me happy, some are an important voice for those who have cancer, some teach me new things, some inspire. Drumroll please . . . my nominees for the Sunshine Blogger Award are . . .

Holly Marie

Annie Forest

Dr. Perry 

Jet Eliot

Cindy Knoke

Val Boyko

Heather Stoker

Cathy Leman

Ilene Kaminsky

Pink Stinks

Surviving Breast Cancer

My Questions For My Nominees

  • What is your favorite dessert and why?
  • Who was your favorite teacher (K-12) and why?
  • What is the best advice you’ve ever been given?
  • When was the last time you laughed really hard? What caused it?
  • What do you enjoy most about the writing process?
  • Where (or when) do you feel happiest?
  • Where in life do you find inspiration?
  • When did you feel like a grown-up?
  • If you could fix one problem in the world, what would it be?
  • Who would you invite to a dinner party if you could choose 5 famous people living today? Short reasons for each would be welcomed.
  • What is one word you can use to describe yourself? No need to explain unless you feel it’s needed.

Let the sun shine in summer and in winter.

Let it emanate from our inner being outward.

Let it shine through our words and blogs.

Find a way for it to shine. Always.