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.

During, Now, and Next

I often read about someone’s cancer experience in terms of before and after cancer. I also often read that there is no after for those living with metastatic breast cancer because we will always be in treatment. Extreme outliers push what is possible. They keep living with cancer year after year. People living with metastatic disease need words that aren’t in terms of before or after.

I prefer during, now, and next.

A Brief Look at Before Cancer

Before cancer was a golden time of no worries. People lived with no physical limitations. They had job security and careers stretching out ahead of them. Dreams were plentiful and ranged from travel, starting families, professional accomplishments, and personal goals. Normal life expectancies were part of the plan. Life was busy with many friends. Five-year plans were achievable and plans were made for the future without doubting the future.

I felt as others did.

Life was good then. I knew it, but I didn’t realize how good I had it.

I didn’t know the meaning of a bad hair day.

I liked October.

Thoughts About After Cancer

For many, after cancer means getting back to normal, returning to work, growing hair, and putting cancer forever in the past. Survivors post side-by-side photos of their cancer days when they were bald next to photos of a year post treatment when they feel they are once and for all done with cancer where it no longer looks like they ever had cancer.

Life after cancer may mean changes in diet and exercise. Maybe there are new considerations for returning to work or career changes. Life may bring changes in income, changes in health insurance, and changes with how bodies look. There are some who reclaim their past and work to make their life after cancer as much like their before cancer life as possible. For some it means continued support groups, giving back to cancer organizations, and participating in other ways to make a difference in the cancer community.

October becomes a month to celebrate the wonderful and misleading world of awareness. A few reminisce about their cancer days almost as if they were remembering summer camp or a crazy story from high school. I figure it’s easy to reminisce when you are on the other side and treatment is done. There are plenty who see cancer far in their past and it doesn’t affect day-to-day life one bit.

Before cancer is only a memory. After cancer is in the present. After cancer is the future.

It’s a strong possibility I would feel the same if I were in their shoes, but I’m not. I don’t know what it’s like to be “cancer free” as they say. I think it’s the same as how someone without cancer doesn’t know what it’s like for someone with cancer. Those of us with cancer don’t even completely understand what it’s like for another person with cancer. We come close. We can identify and empathize with emotional and physical pain. I have been fortunate to connect with many who write exactly what I feel. I think of these people as my friends even though I haven’t met them.

After cancer means returning to normal or the so called new normal.  In my opinion there is no normal or new normal. I describe my life as a new abnormal and wrote about it in an earlier post you can read here.

Long Ago

It’s hard for me to remember my before cancer days. It feels like another lifetime. I have grieved those days as I would a person. Grief resurfaces with some memories of the past. My eyes water lately when looking at old photos. Who was that person that used to be me? It was someone with dreams that have been shattered.

Even photos from childhood cause some sadness.

Teaching was a huge part of my adult life. I am so far away from those days now that it’s hard to remember elements that were driving forces. So many faces have changed where I taught.

Even some memories of my mom, dad, and grandma have drifted almost too far away. I hate that and I miss them.

What was it like to have boundless energy? What was it like to see my future?

I can’t remember.

The world of before is out of reach.

During, Now, and Next

Good words I use to mark time are during, now, and next.

During is like an umbrella held over now and next. It’s all the time from diagnosis onward. It includes a lot of enduring cancer related life like scans, labs, other tests, office visits, treatments, and waiting. Too much time is filled with enduring cancer when treatment days, side effects, and large chunks of time filled with anxieties or sadness take hold. Instead of after cancer I have an undefined during.

During cancer isn’t all bad. I still taught for four years during cancer. Many are able to keep working. I still live independently. I am still active. I still take vacations (just not presently). Many do all these things, too. Many retire and tell others they finally get to do whatever they want because there is no schedule to keep or boss in charge. I don’t do whatever I want because my health can get in the way, but I try. Living well while living with cancer is possible.

During cancer is a time where nothing ever lasts. I’ve lived in this time labeled during so long that I feel like my life before cancer was lived by an entirely different person.

At my core I still have the same values and main personality traits. Cancer has exaggerated some of them. I have more anxieties and more sensitivities. I am quick to cry. Heck, I’ve cried writing this post. I am more intense and more driven which I possibly could attribute to aging and becoming more confident. I put more emphasis on hope and kindness. I can still crack a joke in the midst of personal misery.

Now is an excellent word. Living in the now enables me to focus on the present moment. I appreciate my wildflowers. I listen to the rumble of thunder. I walk barefoot in the grass. I drink refreshing pink lemonade. Now is where I find joy, hope, and positivity. I work hard not to let anything crush my sense of now. I try to enjoy each day. There is always something. Waking up to greet a new day and gratefully closing my eyes to dream at night are bookends for every day.

Now is the present. Savoring the moment when moments are good stretch out my enjoyment. I savor my breakfast. I savor walks in nature when I’m surrounded by trees and see the sun shining though the leaves. I savor gentle breezes on my skin. I savor laughing and feeling loved. None of these moments can be bottled. They can be replicated as often as possible. Many moments living in the now make up a day. It’s where I live when days are good. Those days add up. I am very lucky for the now I have carved out and the now where I live. Now is all I really have. It’s all any of us truly have.

Living my life involves multiple treatment plans. The word next comes into play when I switch to the next treatment. It also applies to my next cycle of whatever current drug I’m receiving. My treatment visits number into the hundreds. Life is filled with more worries and anxieties. I worry I’ll never again have hair when I’m without it. I worry I’ll soon lose it when I have it. It’s one of my big current worries.

Next is my future. I think about next week or next month. I think about my next piece of writing. I think about what I want to work on next with my trainer and my next physical goal. I have goals for next year. I cautiously make plans knowing they may change. I make them with the intention they will happen. I even think long term because that is energy I want the universe to have. I envision a positive and healthy future because I’m not willing to give up dreaming of my future. It may not be the future I planned before cancer, but it is mine now.

I apologize if this all sounds a bit disjointed. These markers in time are fluid and won’t hold still. Referring to words as nouns that usually function as other parts of speech may not come across in the way I hope they do. Living during metastatic breast cancer means living in an ongoing state of flux. I need sets of words to help mark different spots in the spaces where I live. During, now, and next are working well for me.

Summer Challenge 2020

According to the ancient Greeks and Romans, the dog days of summer occurred in late July when Sirius rose just before the sun. The days were referred to as the hottest days of the year. They have arrived where I live with heat indices in the triple digits. Taking a break from the heat and participating in a summer blog hop challenge through Nancy’s Point is a welcomed break from temperatures I don’t tolerate well. A huge thank you goes out to Nancy for organizing this opportunity for bloggers to connect and giving everyone getting a chance to discover new blogs.

Here are my responses to her questions:

Who are you? Tell us whatever you want about you and your blog.

How do I answer succinctly? I am Kristie Konsoer and was born and raised in Wisconsin where I still live. Jump to 2012 when I was diagnosed with metastatic breast cancer. I retired from teaching second grade in 2016. Writing has been one of my lifelong interests. I started Finding A Way in the summer of 2018 because it tied together writing I was already doing with a way to communicate with others. I initially focused on living well while living with metastatic breast cancer. This still remains a main focus although there are times I dwell more on one than the other. I have written a lot about strength, hope, identity, feelings, thoughts about cancer, and my experiences. I share what’s on my mind. I also include a quote midweek on something that has inspired me or I feel is important to share.

What has been your biggest blogging challenge during this pandemic, and how have you been tackling it (or trying to)?

I didn’t feel challenged with blogging during the beginning stages of the pandemic. I found blogging a reassuring constant. I struggled a bit more as the months dragged into summer. Sometimes feelings I have about cancer are awfully heavy and these added to feelings I have about my world becoming smaller and more isolated with no end for the pandemic in sight gets hard. I keep tackling this struggle and others day by day. Focusing on positive moments throughout my day helps a lot.

I have written before that cancer doesn’t wait for curves to flatten or quarantines to end in a post from May you can read here. Continuing to push for more funding for metastatic breast cancer research has been a challenge when there is also a needed focus on COVID research and treatments. I paused briefly in my life and with my writing. There was the feeling that others have also expressed that they were uncertain about sticking to usual topics during this time. I don’t know how to describe it other than I woke up one day and just snapped out of it because I had had enough of hearing some of my efforts to raise money for more research were on hold.

What is something you’ve accomplished with your blog that you’re most proud of?

I am very proud of the body of work that I’ve created over the past two years that reflects my experience. I’ve developed my voice. I’ve written about topics that have been important to me. I have hopefully helped others.

Share two of your best blogging tips.

  1. Stick to a schedule. Have a reserve of upcoming posts that you can move around or schedule in advance in case life gets too busy and you don’t have the time or energy to give to your blog.
  2. Write about what you know. Read other blogs but be authentic to your goals and vision. The cancer blogs I read aren’t the same. I like them because they all offer me something different.

What is one of your blogging goals this year?

I need to work on marketing my blog. I want to continue to build my audience while maintaining consistent readership.

When things get hard, what keeps you blogging, even if not regularly?

Sharing my blog is sharing a part of me. I always find meaning in it. It’s cathartic. Sometimes I wind up with something different than what I planned. I find that quite amazing when that happens because my heart takes over and gives me something I didn’t know I needed. Blogging grounds me.

What is a dream you have for your blog?

A dream is that its reach becomes wider. Perhaps someday it would lead to other writing opportunities.

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

It’s between a story that provides a metaphor for living with cancer and a post that highlights work being done at the Carbone Cancer Center where I receive treatment. Both reflect the scope of what can be read on Finding A Way. I’ve decided to include both.

Dodgeball 

Research Lab Tour

That’s it from me!  Thanks for reading. Hopefully, I’ve linked everything back correctly to Nancy and technology works as expected. Be sure to check out Nancy’s Point and the other bloggers participating in Nancy’s summer challenge. Click on the link at the bottom of the post to read more posts on the hop. Discovering new blogs is a perfect way to spend some time during the dog days of summer wherever you are.

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Trust Suckers and Trust Blowers

A person can be either a Trust Sucker or a Trust Blower.

A Trust Sucker functions exactly how you would expect. Trust is sucked right out of you over time. Maybe it’s through belittling, embarrassment, manipulation, non-shared values as to what is public vs. private information, or repeated poor judgment. It feels like air is being pumped out of your lungs and you are left gasping for breath. The sucker sucks because of what he or she needs, not because of what you are doing or not doing. My theory is trust suckers feel very alone and are unhappy with the success, independence, closeness, or whatever it is that someone else has that they do not.

Trust Blowers are the polar opposites of the suckers. Just as you feel emotionally spent after being with a sucker but may not realize exactly why, you feel differently after being in the company of a blower. Blowers send supportive, positive, and uplifting energy your way. Inhaling is easy. They truly want what is best for you. There is an overwhelming feeling of safety with blowers. They are easy to trust because you know a confidence will stay confidential.

I need to dwell with the blowers as someone living with metastatic breast cancer. It’s about not spending essential energy on people or situations that don’t serve my best health. It’s about taking care of myself and not trying to fix someone else. It’s about feeling loved and trusting myself. I don’t have the energy to waste on someone I can’t trust.

I am extremely cautious about whom I trust in my personal life. As I age, I’ve gotten better at reading people and being able to discern whether to trust a person or not. In general, I use the following as guidelines to help make decisions:

  1. Does the person share private information about others when it isn’t their place to share? Someone who talks a lot about others is likely blabbing about me.
  2. Does the person remember what I’ve shared or take an interest in my life? Or are this person’s actions usually self-serving? Why does it matter? Self-serving people will not care when they break a trust because they lack compassion and empathy. They will not think they did anything wrong and that you are the one making too big of deal of things.
  3. Is the person a giver or a taker? Givers have others’ interests at heart. Takers take and move on to the next opportunity.

Cancer has messed with my ability to trust. Before I was diagnosed, I trusted I would remain healthy and be able to work until a normal retirement age. I trusted annual mammograms and results from ultrasounds. When I went on leave, I trusted that the long-term disability company that my school district contracted with was looking out for my best interest. I now feel the goal of this company was to get me on social security disability income so they wouldn’t have to pay as much. I’ve trusted scan results and later received information that contradicted those facts. Facts aren’t up to interpretation.

There are days where I don’t even trust myself.

I’ve struggled trusting medical information. Sometimes I want to scream at the medical world just as I often did with education. There have been times where I’ve felt like a problem or a difficult patient, rather than a fellow human being. I only have minimum access to information posted regarding test results and I feel like information is being hidden from me when I ask for more. It’s my body and I have right to know. I didn’t lie in a scanner for two hours because it was fun. I do better with more information but it is a balance as too much overwhelms me. Then there have been times where I have felt I was not liked. It’s hard to entrust your care to someone when you feel that someone doesn’t care.

One recent instant surrounds a recent cancer medication I took. I had been told it was important to take it consistently in the morning at around the same time for best results. This is true for most medication. However, this apparently didn’t hold true on treatment days because it was more important to make sure labs were all good. It would be okay to take said drug in the afternoon on those days. I had to keep a patient diary to provide data for a study I was involved with on when I took it, what dose, and its side effects. I took the diary seriously. Months later I was told that no one cared when I took the med by the nurse who collected the data. Even while I stared at this person in disbelief, I told myself I would take it in the mornings even on treatment days if no one cared.

I cared.

I still have diaries that haven’t been collected because I am not on that drug any longer and I no longer have contact with this nurse. How important could this data be? What was entered in its place? Was anything entered? I also still have a one to two month supply of this drug that I was supposed to return when I moved off the study. I haven’t been asked to do so since this nurse hasn’t come knocking for it.

Guess who doesn’t care now?

I’m not going out of my way to return any of it. Chalk it up to medical protocols and schedules in the life of COVID. There are more important things our health professionals need to deal with other than my patient diary and unused pills. Yet, I can’t help but question developments in my patient experience when scenarios like this unfold over time. Details deemed important one day were discarded the next. The inconsistency still surprises me.

Trust matters in a patient doctor relationship. I try hard to trust my oncologist, other doctors, and nurses. I do most of the time. I am not the same patient I was at the start of my metastatic cancer diagnosis. I will speak up. I will ask questions. I will disagree. I will persist and ask again if a question goes unanswered. This may not be a matter of distrust as much as needing information so I understand.

I am part of the team.

I expect to walk together.

I won’t follow blindly.

Trust is built over time and is a strong foundation for solid relationships. I will always look for the blowers rather than the suckers in my life whether it’s personally or medically. Whenever there is uncertainty, and there is plenty of uncertainty, I want people I trust with me so we can walk together.

Giant’s Ladder

Trust must fill the place vacated by the absence of fear.

Since I’m not traveling over the summer due to COVID-19, I am reminiscing about former vacations. My memories take me again back to Miraval.

Giant’s Ladder was another challenge activity in my Arizona getaway. It was described as integrating trust, balance, and cooperation as you climbed a giant ladder that was forty feet high. Participants were also told it was the most physically demanding of the challenge activities offered. It sure was. The eight rungs of the ladder were spaced anywhere from four to six feet apart. In my opinion, most of them were more on the six feet apart end of things. Only the first level was truly manageable. At least for me.

I partnered up with a woman who also traveled alone who had a background in education. Mallory was in the music department at Northwestern University. You could do the activity alone, and apparently there had been people who got to the top on their own, but I don’t see how that could happen. My perspective was lacking in this area. I definitely needed a partner in order to make the smallest of progress on the ladder.

The two of us did an outstanding job of communicating, working as a team, and problem solving. I wasn’t worried about not trusting her, or falling, or balance either. The harness was so secure. The team who belayed the climbers from solid ground below always were poised and ready the entire time to release rope and pick up slack.

I was safer than gold in Fort Knox.

Feeling safe is a huge component of trust.

Without safety, there is fear. I think back to a few moments in my life where I have felt physically unsafe. Fortunately, there have been few of these, but accompanying each has been a terrorizing fear. When I feel safe, I also feel confident whether I am in control of events or not. When I feel safe, there is a prevailing calmness within. When I feel safe, I trust. Safety, confidence, and calmness all attribute to trusting people, situations, and life. In the Giant’s Ladder, I felt safe, confident, and calm. I trusted my partner and the people below who belayed.

The hard part of the challenge was the pure physicality of it. My upper arms got bruised badly, multiple times. The backs of my knees took a beating. I looked very battered the next day. I only made it up about two rungs in the hour that was allotted. Getting to the top would have brought about more lessons in confidence and conquering obstacles. It was the goal, but learning still happened with my limited progress.

People are always there to support me.

People are ready to catch me when I fall.

We all need support. We all fall.

Part of trust is also letting go. You can reread last week’s post on letting go here. Letting go is the bridge between fear and trust. I see this bridge as one of those bridges high above a chasm that sways perilously as I trod carefully across it. Wooden boards are missing underfoot. Rope supports don’t provide much security to my white knuckled hands. The distance to the other side, from fear to trust, is a great divide. But step by step, I scarcely breathe as one foot steps in front of the other. I have to let go to get to the other side.

Metastatic cancer definitely makes me feel unsafe. There have been times where I’ve felt utterly out of control. It takes a lot of reminders that these feelings are just feelings, they are not who I am, and that they will pass. Somewhere there is meaning in all I’ve experienced.

I still have much work to do.

Black Lives Matter

Quotes for the next couple of months will focus on Black Lives Matter. Think a metastatic breast cancer blog isn’t the right platform? Think again.

The mortality rate for Black women diagnosed with breast cancer is 42% higher than the comparable rate for White women.

Black Lives Matter.

Engage Fear

Eleanor Roosevelt once said, “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. . . You must do the thing you think you cannot do.”

What is the thing I think I cannot do? It was ages ago when I first came across this quote. I was still teaching and I thought it might mean teaching again in the same capacity as years past. The shipped has sailed on that option. I am not in the classroom, but I still can teach in other ways.

A multitude of things exist that I think I cannot do. It used to be bike rides. I have enjoyed some long bike rides for the past few years. I returned to a favorite bluff that proved too much for me one day and hiked it to prove to myself I could do it. Taking a vacation by myself is another example. I planned a trip to Alabama in February of last year. It was a glorious experience in discovery and independence.

If I did nothing when faced with things I think I cannot do and stayed in fear, then I would be immobilized. Doing nothing is no way to live.

All of my choices matter so much more now. Treatment choices have results. They always have, but bumpier roads have an effect on how I interpret those results. Some things can’t be undone as easily as choices and decisions from my younger years. Like a deer frozen in the headlights, fear keeps me from moving and making decisions.

Everyone must get past fear. When I don’t care about consequences, I believe that I just may be able to do everything I want in terms of living. I feel much more like the old me. Over the past year, I’ve done things I didn’t know I had in me. I spearheaded a yearlong fundraiser for metastatic breast cancer research. It has renewed my spirits and stoked a fire within me. I put some plans into motion at the beginning of this year because I moved past fear. I planned a vacation to Sedona with a good friend. We booked the trip. COVID-19 kept us home as it did for many.

Engaging fear is like golfing in a lightning storm. No one wants to get struck by lightning. Lightning destroys, starts fires, and kills. All these are scary things. But not golfing is also frightening when it’s the only path to a better everything. Golfing in a storm metaphorically may be the only choice.

My odds of being hit by lightning are 1 in 700,000. I had a 1 in 8 chance of getting breast cancer. Odds aside, I engage with my fears.

Our fears are not there to scare us. They show us what is important.

Teaching is important to me and I will teach through my writing and my actions. We all teach one another through our actions. Blogging allows me to use my voice. It is important to me to ask scary questions and advocate for myself at oncology appointments because knowledge is better than not knowing. I need to understand as much as I can.

Engaging fear makes fear less fearful. I never thought I would connect engaging fear with negating fear. I resolve to move forward one fear at a time. Doing this is a true testament to strength, courage, and confidence.

How does the fear engaging process work? Associated thoughts a person has about a fear need to change with the actions caused by them. Feelings then change as a result. For example, I am somewhat afraid of severe weather. Tornado warnings as a child in the middle of the night involved uncomfortable basement conditions, flashlights when the electricity went out, and the battery powered radio. There were no weather radios, nor had the age of technology hit where you could track storms on your own and know if a bad storm was in your path and its approximate time of arrival. There were no cell phones or constant internet access. We didn’t even have a telephone in the basement. Yet, there was a sound rule: If the siren was heard or the TV had the tornado warning symbol, down went the family into the basement. It was a good rule.

Nowadays I am on my own. My thoughts associated with severe weather have changed, and therefore so have my actions. I have a weather radio. It is programmed to sound the alarm for tornado warnings. Storms wake me up anyway. There have been numerous occasions where I have trekked downstairs with my iPad and iPhone (along with shoes, jacket, car keys, etc.) in hand to watch TV for a bit when the light on the weather radio hasn’t flashed because that’s what I needed to do to feel safe. There’s a defining distinction – I felt safer rather than fearful.

Facing a fear always makes the fear lose power. I have a good plan for severe weather. The threat of a destructive storm or tornado is real and out of my control. My response to the danger is within my control. I am pretty calm about these types of storms now and luckily have never been in anything so devastating as to be a major life event.

My anxieties, on the other hand, have damaged me over the years. Anxiety is all about perceived danger. Perceived, not real. The worry I’ve created internally and externally about losing aspects of my life due to potential turns in my health has not been healthy. It doesn’t resonate with my usual mindset. The stress response that goes with anxiety is unwelcome. Changing the associated thoughts and actions I have toward these anxieties is key. I do much better when I outwardly talk back to my fears and anxieties and tell them to GO AWAY, followed by a sentence of what I AM going to do rather than what the fear or anxiety is going to do.

Another good example of engaging fear is centered on the vacation I had planned to Sedona. Due to COVID-19, the trip was quickly unbooked. I have a big underlying health condition. I engaged with my fear. I made pro and con lists. My friend who was going with me works in health care. We talked through the situation over a pizza and decided together we couldn’t do it. The whole thing was canceled right then and there. Sad? Yes. But I felt an overwhelming wave of relief because it was the right decision. By the next weekend, recommendations were being made not to travel anywhere. I am unbelievably happy that I wrestled with my feelings and did what I knew I had to do to stay safe.

I have made enormous strides in engaging fear. I still have fears. I think I always will because I plan to keep growing and new unknowns will continue to surface. I am up against some scary unknowns these days. I feel like I’ve lost. Lost the ability to choose. Lost control. Lost my voice. Lost some trust. Lost again. Losses and potential losses increase my fears. I’ve been engaging with fear multiple times daily. Life is giving me more ways to lose. I feel, I engage, and I try to move through it. I’m having a hard time. I am waiting for the fears I’m feeling to be negated. I am waiting for them to feel less powerful.

Well, I’m finishing this post in a different place than I planned. The hope I usually have is hiding. I’m golfing in that lightning storm and I don’t like it. I am wet, cold, and a bad golfer. But I’ll hold fiercely to my 9-iron and I’m prepared to whack anyone with it who gets in my way. Eleanor Roosevelt may not have thought very highly of this behavior. Oh, well. Engaging fear isn’t meant to be pretty.

Fundraiser Reflections

My Nifty 50 fundraising efforts have come to an end. I realize I have blogged often about this over the past ten months. This is it . . . very definitely maybe. Yet, it’s been a very successful part of my life. Success is important in the life of someone living with metastatic breast cancer. Success needs to be celebrated. I know I’m tooting my own horn a bit with this post. It is strange territory as I consider myself quite modest. I often look back on completed tasks to reflect on what I’ve learned and reasons why I think something worked. The “reasons why I think something worked part” may be of particular interest to anyone reading who has an interest in fundraising.

My goal was $50,000. The current total is $60,050.

Not too shabby for a fundraising rookie.

Here are a few of my reflections on the process and reasons why I think it worked.

Connections

I was fortunate to connect with the right people who could help support my vision. I worked regularly with two contacts at the UW Foundation who supported my goal. I know these connections wanted me to succeed. My success raised needed funds. Using a MyCarbone personalized fundraising page gave me a platform where I could reach many.

I also spoke often with Rob and Mary Gooze who founded the More for Stage IV Fund through UW Carbone. I learned a lot from their experiences. Their support was phenomenal. They have been in the fundraising world for over six years. Everything they do is polished and professional. Both always pointed me in the right direction whenever I needed to run something by them.

Connecting with the right people and using a platform that many have access to are huge supports when trying to raise money and reach people. News stories on TV helped a lot with outreach, too. Successful fundraising must reach past family and friends. Bigger and bigger circles mean more and more people are hearing about the need for more funding and research for metastatic breast cancer.

Bigger Than Myself

What I accomplished was bigger than myself. And I did it from scratch. There are those in the world who operate from a lens of only how events affect them as individuals. I wasn’t asking to fund a vacation or go on a shopping spree. It wasn’t about me. I worked for the greater good. One reason why I think so many embraced my goal was that it affected so many people. Research affects all of us. 42,690 women and men will die from MBC this year – that’s almost 117 a day. I am fully aware it takes years for an effective drug to go from research trial to FDA approval. My hope is research funded in part from Nifty 50 will benefit many men and women down the road. I’m hoping to benefit from all scientific developments available to me that the near future has to offer. Treatments that are available thanks to someone else’s fundraising for more research.

Coming Together

This project gave people an opportunity to join something where they could be part of something that grew. It feels good right now to be part of something where you can support it and feel like you made a difference. I know I made an impact. Events that were held brought people in the community together. I hope I changed perceptions on breast cancer research and people understand that MBC gets a pretty small sliver of funds designated for breast cancer. I know I got people talking in my neighborhood. I heard from old childhood friends, classmates and friends from my graduating class in high school, lots of friends and colleagues from more recent teaching days. I heard from former neighbors who had moved out of state. I also heard from many people I don’t know and probably never will meet. I read story upon story in comments from those grieving and honoring loved ones who felt compelled to share a part of their story. Nurses from both the cancer clinic and cancer center chipped in and offered me encouragement and their thanks. I am in awe of all of these humans who are amazing on their own and part of a wondrous whole.

Support

The support I felt personally from those messages written on my page lifted me more than I can say. I cried a lot reading those. Some encouragement was loud, some support was quiet, and some was anonymous, but all of it kept me going forward. The outpouring of support made me feel like my actions mattered. I felt people heard me. It made me feel a bit like George Bailey at the end of It’s A Wonderful Life when the whole town showers him with support. I’m no George Bailey, but I felt how I imagine he did at the end of the movie.

Planned Like a Teacher

I approached my fundraiser like a teacher. Teachers make something out of nothing all the time. We call it a school year. And we do it repeatedly. I mapped out ideas and strived for an event or focal point each month. Plans often were revised much in the same way as lesson plans got modified. Nifty 50 gave me a very strong sense of power and purpose, much like teaching did. Nifty 50 made me tired and at times a little stressed, much like teaching did. Kindness was a cornerstone of my classroom. Gratitude still matters in everything. I’ve sent thank you letters to all donors (except for the anonymous ones) featuring photos and highlights of events throughout the year. I wrote personalized notes at the bottom of each. There was a beginning and end date to Nifty 50 just like a school year. Summer provided rejuvenation in between school years. I was always excited to go back in fall and do it all over again from beginning to end. Herein is a problem and some unsettled feelings for me. There is no next fundraiser. I am just done and don’t quite know what to do with myself. Where is my purpose now? I don’t know. I need a bit of a rest and need to focus on me for a bit.

Monumental Achievement

I did it. Me. I don’t typically bite off this much.

And I did it while living with metastatic breast cancer.

AND I completed my efforts during COVID-19.

Sometimes I am the person I’m trying to convince that I can still accomplish quite a bit. Having purpose and goals gives me focus and a place to direct my energy. I hope people remember well after my fundraiser has faded away that ideas that might seem out of reach are possible. It was called ambitious at the beginning by some. Lofty was another word I heard it described as recently. Hmmm . . . I still have to talk to one of my friends about calling it lofty. Ambitious and lofty aren’t necessarily negative terms, but in my mind those words have always been connected more to unobtainable goals rather than determination. I’ve always aimed high. I wanted this to happen. I had quite a bit of control in getting it to happen. I planned events. There was publicity. I stayed persistent and kept hammering away at what I wanted from different angles. A lot of my time and efforts were devoted to this work. I surrounded myself with effective people who knew more about fundraising than I did. I asked a lot of questions to find out what I didn’t know and what I needed to do to get something to happen. I heard NO perhaps more often than I heard YES. Every YES was vital. I even turned a NO here and there into a YES with some reframing.

I have done many things in life. This undoubtedly was something I didn’t expect I would do. I’m proud of what I accomplished. I hope people see that one person can create a spark that creates a fire. We are better when we work together.

I end by referencing the movie Field of Dreams. Ray (played by Kevin Costner) heard a whisper in his cornfield. He heard the now famous phrase, “If you build it, he will come.” Ray believed. He built it. Then Shoeless Joe Jackson came along with many others. My word for 2020 is BELIEVE. I believed I could achieve my goal. I built it. People came. I think it’s the belief in something that is sometimes the biggest reason why something works.

Keep believing.

Top Ten MBC Supports

While I was out walking the other day, I passed the home of a student I had taught a few years back. I’m still friendly with the student’s mother and she was out working in her yard. Our paths have crossed more over the last few months. We have some similar interests and both like supporting our community. On this particular day, she shared that a cousin out in New York City had been diagnosed with metastatic breast cancer. Active. Mid-thirties. A new mother. It’s unbelievably hard to process at any time in a person’s life, but I understood it was hitting her really hard during COVID-19 in a geographic area that has seen astronomically high numbers of cases and deaths from the virus. I am calling her Marcie which is not her real name.

I know what’s like to be going through active treatment during a pandemic in Wisconsin. My lens is what I experience and what I see through network news. I don’t know exactly what life is like for Marcie, but I empathize. I know far too well what it’s like to have life repeatedly turned upside down. My friend asked if there was anything I could share with her that she could pass on to someone newly diagnosed with stage iv breast cancer. We talked a bit longer and I said I would message her a couple of ideas.

I found I couldn’t limit it two or three tips as I thought about what to send. There are many things I’ve done over the years. Some pieces fit into my life better than others. Everyone has their own list of what works for them. I thought about what worked for me, what still works for me, and came up with a top ten list that I sent my friend. Marcie and I are now in communication. I share my list as today’s post.

Top Ten MBC Supports

  1. Take a health journal with you to appointments. Use it to note vitals, take notes, keep a list of questions, document side effects, file test results, etc. I am on my third binder. My notes helped me understand appointments better, remember them, and sometimes I needed them if my oncologist said something that I found contradicted something earlier. A health journal provides a source of accountability.
  2. Consider buying Radical Remission by Kelley Turner. This is the top book I’d recommend from all the cancer ones I have read. I heard she also has a podcast. I haven’t listened to the podcast. I am cheating a bit with this point because it contains much of the advice you would suspect to hear on nutrition, stress, and more. It examines 9 factors that long term survivors have in common.
  3. Belleruth Nepartsek has a guided imagery CD that I downloaded early on in my diagnosis. It was called “Fight Cancer.” I listened to a guided imagery segment and an affirmation segment daily. I am sure she has several guided imageries. The one I like involves a real or imagined place outdoors where you are surrounded by supporters that you know or may not know. It was often in the afternoon when I felt fatigued and I would fall asleep as I listened. I still listen to it every so often. I find it empowering.
  4. Comfort foods are good. When you feel sick, you need to eat what keeps the vomit demons at bay.
  5. Exercise as you are able. Even if you don’t feel like it. Try to do a little walking every day to keep moving. I wasn’t always good at this. Now, it is a priority every day.
  6. I found essential oils helped with anxiety and nausea. They are not to be ingested. Just inhale. Lavender, peppermint, and spearmint work well for anxiety and nausea.
  7. You may have to set boundaries with others on what you need and don’t need. It’s okay to say no thank you. Don’t feel pressure to accept invitations or share information just because someone asks insensitive, none of their business questions.
  8. Some people you may not know very well will rise up and sincerely support you. Let them in. Keep in mind those boundaries. Some people you’ve known for years, perhaps some family members and close friends, may disappear because they honestly can’t handle your situation. Let them go.
  9. Advocate for yourself. Ask questions. Be persistent. Be knowledgeable. These qualities make you an assertive and strong patient – not annoying or difficult. Look into your rights as a patient. Know your rights.
  10. Ignore statistics whenever possible. You are not a number. I was given literature to read before initial treatment even started. I could see it contained percentages on survival rates . . . and I threw it out unread.

Bonus Support

I forgot maybe one of the most important things I’ve internalized . . . DON’T GIVE UP. There is a lot of research happening on the metastatic breast cancer front. Ask about it. Research the research on your own. One of the best things I did was some special genetic testing through FOUNDATION ONE that identified some new mutations in cells. Mutations that can be targeted.

Don’t give up. Keep searching to find a way.

Always.

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.