Cancer Research Lab Tour

I had the opportunity last week to tour the Burkard Lab for Breast Cancer Research at the UW Carbone Cancer Center. Dr. Mark Burkard is one of the oncologists there. In addition to seeing patients with breast cancer, his research interest is in targeted therapies, especially those directed at protein kinases. He also heads up the Outlier Study in addition to work in clinical trials. It’s his lab that I toured.

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Burkard Lab for Breast Cancer Research, UW Carbone

My working knowledge of cancer started when my mother was first diagnosed with primary breast cancer. I learned a lot more years later when hers became metastatic and with my initial diagnosis of metastatic breast cancer in 2012. A period of time exists between then and now where lots of information has blurred. Science never was my strongest subject. I’ll do my best to summarize what I understood from the evening’s tour. Beware of technical difficulties.

The lab tour was guided by graduate students and research team members through several stations in the lab much like learning stations would be set up in a classroom. The structure lent itself well to guiding a group of people through areas in smaller groups to provide a more personal experience. Snapshot descriptions of each station follow.

Cell Division Station

The first station was led by graduate student Roshan Xavier Norman. He explained how erroneous cell division can cause lagging chromosomes that form a micronucleus. This micronucleus doesn’t have all the material it’s supposed to have. It can lead to cancer if a cell doesn’t have the same nucleus material as the others. His work involves staining proteins in cells and looking at them through expansion microscopy. This enables him to see molecular structures at high resolution and see the difference between normal cells and abnormal cancer cells. He talked at length about chromosome segregation, spindle abnormalities, and differences in cells from mitosis that were damaged because of lagging chromosomes during DNA replication. It became very technical for me to understand, but the gist I took away was he was being successful in pinpointing these errors in cell division and there are applications to research.

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Expansion micCell Division in Various Stages

Outliers Study Station

Rob Lera, PhD, is a research associate and has been with the Burkard Research Group since 2009. He talked about the Extreme Long Term Survivor Study. The goal of this study is to identify patterns that attribute to long term survival in metastatic breast cancer patients. This study is also known as the Outliers Study because despite the odds, there are metastatic breast cancer patients living well beyond the expected two to three years median survival rate when diagnosed. There are two survivors still going strong by surviving greater than forty years, one of whom was on the tour that night! I felt like I needed to go and rub up against her for luck. Fifty of the longest survivors since their original primary diagnosis have been surviving from 22-42 years.

Data on participants in this study are gathered through extensive paper/online questionnaires, phone interviews, saliva kits, and extracting tissue samples. Most participants are HR+ Her2 – but there is representation from all MBC subtypes. Then it is all analyzed for patterns.

Preliminary results can be found HERE.

It appears the only conclusion drawn so far is there is no apparent correlation between exercise and time living with cancer or metastatic breast cancer. Cancer is so individualized. My personal opinion is that the 720 participants in the study surely must have done things outside the medical box and thrown some of the medical advice out the window to still be around today. I need to think outliers didn’t get where they are from playing by all the rules. It sure would suck if there were no correlations at all and extreme long term survival amounts to pure luck.

I was discussing some of the possible factors determining survival with one of my friends on the tour who has a nursing background and we unscientifically agreed that if an individual thought something made a difference, then it made a difference. I happen to believe the daily exercise I do now makes a difference in my health. I exercise daily and get my 150 minutes each week, usually more. Feeling like I’m doing something positive in terms of my health matters to me. Belief is a powerful medicine. It is one of many attributes and patterns that can’t be measured through this study.

I filled out a preliminary survey for the Outliers Study and felt I provided lots of information on why I feel I’ve survived so far. I am one of the little lines on one of their charts. I haven’t survived long enough to be interesting enough for further study. Someday I will be.

Patient Derived Organoids

Rachel Sundstrom is a research specialist with a degree that’s focused on biochemistry, cellular and molecular biology. Her work involves analyzing patient derived organoids (PDOs). PDOs are cancer cells from patients with breast cancer tumors that are grown in a 3D model. They mimic the biological characteristics of the primary tumors. I think this is what she meant when she talked about organoid morphology and how she is working with different Taxol concentrations that cause cell death, trying to find the just right level for that to happen.

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I had the opportunity to look through the microscope at a sample PDO.

All this work is worthwhile. I spoke to another friend the day before this tour and she told me about experiments where cancer cells were taken from a patient’s body, grown in separate petri dishes, and then various chemotherapies and targeted therapies were tested out to see which treatments the cancer responded to best. I asked if this type of work was being done at Carbone. No, it isn’t. Well, I responded that’s the direction I felt research needed to take. She said some work similar to what I had asked about is being done at the colon cancer lab on campus headed by Dr. Dustin Deming. I have met Dr. Deming and heard him speak about his work with colon cancer treatments. He told me there are some crossovers that may be applicable to breast cancer. Anyway, I made it clear I wanted that kind of work to happen at this lab. Why wasn’t it being done?

It’s expensive.

My response: Yes, research is expensive. People die. That has a cost, too.

I hope my comments were heard and get discussed further elsewhere in the context of future projects being planned. I know a handful of people on the tour that evening had metastatic breast cancer. We were there because of our health and want to live. We support research being done. We want to be outliers. I was not there just to learn and pat them on the back. I want to drive change.

It seemed like the perfect opportunity to communicate, “Is this being done? I would like this to happen here. When will it happen?”

I felt a little like it was the elephant in the room.

I wondered if I was the only one seeing it.

Immune Response Station

Yang Hu presented his graduate work on the effects of Taxol on activating an immune response to cancer cells. T cells are a type of white blood cell that are important to the immune system. They are important because they can adapt and tailor a response to specific pathogens. These cells are often likened to soldiers that target and destroy bad cells. The challenge is to get these T cells near enough to the cancer cells in order to kill them off. His work is showing that paclitaxel/Taxol can stimulate T cell immune responses for some people. His sample size is small, however, there may be a small pattern emerging where triple negative breast cancer (TNBC) patients have responded more to this type of treatment than other breast cancer subtypes.

I would like to know what goes into the process of determining which projects get accepted and researched. The lab was interesting to see. In my mind I pictured it as being very spacious and sterile, filled with high tech equipment, cold, and lots of white. People would walk around wearing lab coats, goggles, and gloves. That’s how TV and movies depict research labs. It wasn’t at all like those images. Every nook and cranny was used. It was crowded with color. I was reminded of how I used space in my old classroom.

I am grateful that these researchers are using their time and talents to dedicate their lives to breast cancer research. Teaching hospitals often have tours of research facilities as it’s one way to promote their work and thank donors who’ve helped make that work possible. My suggestion is it’s well worth your time to find one to tour, learn about what’s being researched, and ask the questions that matter to you. Do some research!

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.

End of a Decade

 

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Image credit: pixabay.com

December not only ends another year but it will finish a decade.

2020 is days away.

What has made history since 2010?

A lot. The world is a big place and I will leave out many events. My perspective is primarily through the lens of someone living in the United States. There have been cataclysmic forces of nature that ended lives. Gun violence has become common and largely ignored. I’ve included advancements in technology that have changed our lives for better or worse. Many events happened that aren’t mentioned here. The following is a mere sampling.

The decade got off to a horrific start. Haiti was devastated by a magnitude 7.0 earthquake on January 12, 2010. It left more than 316,000 dead or missing, over 300,000 injured, and over 1.3 million homeless.

The first iPad came out in April of 2010.

On April 29, 2011, over 22 million viewers watched Prince William marry Kate Middleton.

Many viral challenges came and went in the past decade. The Ice Bucket Challenge raised over $115 million for ALS awareness and research during the summer of 2014.

The world argued over whether a dress was black and blue or white and gold in 2015.

Apple also released racially diverse emojis in 2015.

The Supreme Court ruled that gay marriage was legal on June 26, 2015.

The largest single-day demonstration in U.S. history took place on January 20, 2017, to support gender equality, civil rights, and other issues that affect women. It was called the Women’s March and drew over 5 million people in over 600 marches across the world. Reportedly, around 500,000 people were in attendance at the Washington March.

On September 20, 2017, Hurricane Maria struck Puerto Rico. The Category 5 hurricane caused a major humanitarian crisis to Puerto Rico’s 3.4 million residents.

A total solar eclipse was visible across the U.S. in August of 2017. Another one won’t be visible until 2024.

The most diverse class of lawmakers in history was sworn into Congress in January of 2019.

Astronomers captured the first image of a black hole on April 10, 2019.

Donald J. Trump became the 3rd U.S. president to be impeached on December 18, 2019.

What has the last decade been like for me personally?

I sold my condo and moved into a beautiful home in 2010.

I planned to become an adoptive parent. Cancer had other plans.

I was diagnosed with metastatic breast cancer in the spring of 2012.

My mother died from MBC in April of 2013.

I taught for the first six years of the decade which I found blissful, purposeful, and frustrating. I went on medical leave from my job in the fall of 2016 and officially retired from a teaching career in June of 2018.

I started this blog on August 25, 2018.

Cancer sucks and it has consumed far too much of the decade and taken far too much of me. But I’m still here.

It’s easy to say fuck cancer and that the last decade sucked. I do say it. Things often undeniably suck in a very fuckful fuckable fuckety way.

A Triple F if you will.

It’s harder to embrace all the goodness and joy that abounds when you are living with a deadly disease. Amazingly, I have felt profound joy and happiness when I have been filled with feelings of love and something divine out in nature. I have basked in the warmth of time spent with dear friends. I have been inspired by encouragement and support from my family, friends, and strangers. I have been filled with prolonged moments of peace.

This decade has been harder for me than I ever could have known. I will move forward into 2020 with the intention to continue living in love, hope, and light.

What advances have there been for treating cancer over the last ten years?

I became overwhelmed trying to sort through information. Many drugs that have been approved for one kind of cancer have also been effective in treating a different kind. There are different approval dates based on different indications. Some drugs work well in conjunction with one another but didn’t start out that way. Some drugs have different FDA approval dates based on changes in dosing. Fulvestrant is one of these – it’s been around a long time but receiving a high dose (fulvestrant HD) when first receiving this drug makes an old drug better. This change has been approved within the past couple of years. New combinations are being tested in trials every day. I can’t do justice to all the approved breast cancer drugs in one post. I encourage those interested in learning more to visit the National Cancer Institute and Food and Drug Administration to conduct your own searches.

As I nosed around on FDA.gov, it looked like there have been over 20 approved drugs for treating cancers in 2019 alone. I don’t know how many of these are applicable to specific breast cancer or metastatic breast cancer settings. It was part of my feeling overwhelmed.

Back to the last decade and the development of drugs to treat breast cancer.

I begin with these caveats:

  • Information provided is true to the best of my knowledge.
  • The first known FDA approval date is given unless otherwise noted.
  • Drug names are listed first followed by brand names.
  • Keep in mind, this is not a complete list.

Just for fun, here are a few drugs from the 90s that are still widely used today:

  • anastrolzole/Arimidex  1995
  • letrozole/Femara  1997
  • trastuzumab/Herceptin  1998
  • capecitabine/Xeloda  1998
  • exemestane/Aromasin  1999

Early 2000s:

  • fulvestrant/Faslodex  2002
  • lapatinib/Tykerb  2007
  • everolimus/Afinitor  2009 (2012 for MBC)

And finally, here is a snapshot of what the last decade has seen in FDA approved drugs for treating breast cancer:

  • eribulin/Halaven November 2010
  • capecitabine/Xeloda September 2013
  • gemcitabine/Gemzar (2004) with carboplatin  2015
  • palbociclib/IBRANCE  2015
  • neratinib July  2017
  • abemaciclib/Verzenio  September  2017
  • trastuzumab and pertuzumab December  2017
  • alpelisib/PIQRAY  May 24, 2019
  • trastuzumab deruxtecan / Enhertu is the newest drug available to treat metastatic breast cancer with FDA approval as of December 20, 2019. Read about this latest advancement here.

Tucatinib also is showing a lot of promise for those with metastatic breast cancer. From what I’ve read or heard, this is still in trial status. If my science friend Pauline is reading this and would like to drop some science on us, please comment below and share in language we understand and can take to our oncologists.

I started my cancer life on a regimen of doxorubicin /Adriamycin (approved in 1974) Cytoxan (approved in 1959) followed by paclitaxel /Taxol (approved in 1994).

No new drugs were approved between 1974 and 1994. How is that true?

As I look at the lists of drugs above it seems abundantly clear I would not still be here without the advancements of the last decade. So many targeted therapies have emerged and many more are in the future. Research is responsible for these advancements. I have been on many of the drugs listed above. I need more options that will specifically target mutated cancer cells in my body. I believe in research happening at UW Carbone.

My medical background is that of a patient. Gone are the days when I say I don’t have a medical background because I have had quite an education. I don’t have a degree, but I have a background. Unfortunately, the past decade has schooled me through first-hand experience. I bring that knowledge to the table and to each office visit. I plan to keep bringing it.

And I will find a way to bring it wherever I find myself in 2020.

Happy New Year.

Big Steps

This is a tale of taking steps.

Step One: Failure and Recovery

It starts last September in a training session where my fitness coach was gathering baseline data to use for setting goals.

She wanted me to step up on a medium sized step up box without any help from my hands, other equipment, walls, etc. It was hard for me.

I can step up on a small step up box 12 inches high successfully without support.

The medium box is 18 inches high. I can do it if I am holding something for support. This means I am using leg muscles and relying on arm muscles for help. What counts in this setting is to not use arm muscles. My hamstrings, quads, glutes, and core need to do all the work.

I knew it wasn’t going to go well and I didn’t want to do it. My coach was there to hold on to me if I needed it. She’s great but I didn’t find her stabilizing. I fell backward, stumbled, but was able to right myself so I didn’t fall.

It was scary. There were tears. I moved to another part of my workout. We focused on all the things I was really good at. I don’t do well with fear or failure and couldn’t shake the voices in my head. Casting away those negative voices is also hard for me. It bugged me that I had trouble with the box because I knew I could do it. At home stepping up and down from a kitchen chair I had moved into a corner was part of my workout because it mimicked climbing hills and making big steps I climbed on hikes. I hold on to the top of the chair while I practice which is cheating, but it works for me.

Since I couldn’t get rid of the voices, I moved the medium box to a corner and did it confidently without issues, without hesitation, without fear. I felt a little better. It shut up the voices and I salvaged what I could.

Step Two: Approximated Movements and Muscle Building

Some time ago I bought a TRX suspension trainer to use at home. Entire workouts can be built around it. I love using it because it works so many different muscles and fits whatever level of difficulty I need. I can do pull-ups, push-ups, squats, lunges, stretches, and modified yoga moves. Working with it makes my body feel quite good.

I hang on to the TRX when I’m practicing with the medium box at my weekly training session.

I have worked to isolate movements in my hips, glutes, and legs.

I climb my staircase at home with exaggerated movements pretending my regular steps are jumbo-sized.

I have turned on my abs repeatedly.

I have exhausted myself and felt like I wasn’t making any progress at all.

Step Three: Success

Muscle memory is mysterious yet strong.

Something happened at the end of November.

I felt like I wasn’t making any discernible progress. There was a minuscule lift of maybe an inch when I would try to push off from the ground with my foot. I didn’t have the needed strength.

My trainer set the small box next to the medium box. I stepped onto the small box, then the medium box easily. I took one big step backward from the medium box to lower myself to the floor. Even doing that terrified me the first time because it felt like such a big step down. I modified (cheated) and held onto something to make sure one foot was securely on the ground before letting go and step down with the other foot. It was doable. I repeated this exercise several times not using my hands.

I tried stepping up from the ground straight to the medium sized box. No dice. I was unable to piece it together moving forward. My trainer gave me the TRX to use while I stepped up. As an educator, I’m all for modification and chunking smaller steps together. I get it. I know that’s what I’ve been practicing. I don’t get why I haven’t progressed faster.

It was time for something different. What was next? Did I want to do arm pulls or push-ups? Neither. I wanted to use the punching bag. I like hitting. Beating up something other than myself feels good. Hitting works. It helps me focus. Other feelings fall away.

More practice on the box was next. No one expected a surprise. I was to practice a skill in isolation and work on pushing off with one foot.

I knew I felt different as I walked to the box. Let’s blame it on adrenaline. An insane idea entered my mind when I was just a couple of steps from the box that I was going to go for it and I’d make it this time. In hindsight, I should have announced my plans in case my plans didn’t work out and I needed help. I still had on the boxing gloves and wouldn’t be able to grab anything easily if I fell.

The momentum was there. I stepped up, pushed off, used my core, glutes, and leg strength, and just like that, I stood on the box.

Yes, I did it. Triumph was mine.

I did it several more times, giddy and confused with my success.

Step Four: Real Life

A step up is defined as when there is an increase in size or amount. There have been noticeable improvements in my strength and stamina where my fitness is concerned. Right now, I feel I struggle a bit more because I’ve moved up a level.

Quite often I find I am not making many strides living with metastatic breast cancer. Every time I go to the hospital for treatment, I am faced with at least one aggravation, usually several ranging from long wait times, people who don’t know who I am, insurance or billing absurdities, and of course health hurdles. I will step up to each of these with as much tenacity as I can muster. Persistence and doggedness paid off in the classroom when digging in my heels with teaching children. I do it well and I’m getting lots of opportunities to showcase how stubborn I can be. My life away from treatment days when I can do things the way I want without restraints (aka the right way) goes much more smoothly.

There have been changes I’ve noticed in myself. I’ve stepped up in my confidence. I carry myself with more assurance and I see it in how I talk to others and what I’m willing to take on myself. I am bolder when I stand up for myself and say what I need when I’m at an office visit or treatment. I plan events that go well. Each successful event moves me closer to a greater goal.

The Rockettes practice hours a day to ensure everyone is in the right step at the right time for a performance. Marching bands do the same. The moon landing and the first steps on the moon didn’t just happen. It took many people working together and many small steps over time that added up to a giant leap for mankind. Medical advancements, breakthroughs, and treatments used today are the result of research, trials, and carefully planned steps that led to medical successes.

In what areas of life do you need to step up? Success takes time. Moving forward takes time. Whatever it is that challenges you, keep at it one step (up) at a time. Use a TRX suspension trainer or boxing gloves if you need a hand. Keep working.

Giving

Winston Churchill once said, “We make a living by what we get. We make a life by what we give.”

Giving is a common theme this time of year. Thanksgiving and Christmas both remind us to show thanks for the gifts in our lives. Giving is just as meaningful as receiving, perhaps even more so.

Material gifts are one of the first things that many think of when they think of giving. Advertisements of cars tied with giant red bows, glittery diamonds in tiny boxes, and shelves filled with toys or home appliances bombard us nonstop this time of year. These types of gifts cost money regardless of how good of a deal is offered. There is nothing wrong with gifts that cost money.

Giving doesn’t have to cost a lot. I want to focus on these simple and meaningful ways to give. Small gestures can be highly fulfilling. Buying someone a cup of coffee or a cookie works. Bake muffins for an elderly neighbor. Buy mints and leave them anonymously on co-workers’ desks.

Giving doesn’t have to cost anything. Passing along books to the corner little free library gives someone else a book you enjoyed. Bagging up clothes for clothing drives recycles clothes you’ve outgrown and is a great way to declutter. Rake leaves or shovel for someone. Send your child’s teacher a thank you email. If your child is grown, send a thank you to a former teacher. No kids? Find a teacher and thank them anyway.

Some of the gifts I’ve kept as a teacher have been notes and pictures given to me by my students. I’ve kept a few letters from parents, too. They haven’t cost a cent but have high value for me. Cards are special in today’s world of emails and texts. I love getting cards. I equally love sending them. Letting someone know you’re thinking about them is a great gift.

Here are a few other ways to give that are free:

Be emotionally available. Make the time to listen. Don’t try to fix anything. Being supportive is listening – not fixing, micromanaging, or criticizing. Don’t switch the conversation back to you and your life. Just listen. Listening and being emotionally available are gifts to someone.

Time is a gift. Carving out those moments for a standing phone call or favorite activities is time well spent. I love to walk and talk. Nature, exercise, and good company are seldom beat. And yes, I want more time. I have lots I still need to do. The time I’ve been given is priceless. I still want more and always will. Not having time is unfair. I don’t want to waste mine.

After that, it’s time for a joke. Laughter is another type of gift. Here goes: Why did the police arrest the turkey? They suspected fowl play. Continue reading when you’ve stopped laughing (or groaning).

Other ways to give are through volunteering, random acts of kindness, and caring for the environment. I often wonder what would happen if we placed little notes on people’s desks, in mailboxes, in children’s rooms that simply read, “I noticed what you did earlier. Thank you.” Maybe you saw them do nothing, but a little mystery never hurt anyone. Chances are the person would have done one kind thing they could identify. I bet it would make people feel pretty good and have a ripple effect.

A sincere and specific compliment goes a long way. People can sense when someone isn’t being honest. It drives me nuts when someone rattles off what is supposed to be a compliment but doesn’t even look me in the eyes. Nonverbal cues matter. It’s okay if a compliment isn’t reciprocated. You aren’t giving one just to get one. People who don’t receive compliments hopefully still are deserving of them and need to hear them the most. Overworked nurses, grocery checkers, coffee baristas, the person at the drive-through all are people with feelings who may be having a bad day. One kind word, smile, or compliment can turn someone’s day around.

Giving of yourself, your time and your talents, is one of the greatest gifts a person has to give. Teaching has been one of the largest gifts I have had to give in my life. I’d like to think my words are another gift. Cancer has NOT been a gift, let me be absolutely clear on that point. I won’t deny I have been driven to change things that I likely wouldn’t be doing if I wasn’t living with metastatic breast cancer. I am working to make a difference so others like me receive more empathy from providers, patients remain the focus of health care, and that research for metastatic breast cancer receives more funding so that more treatment options are available and more effective for patients. It is a lasting gift I can make possible for others that provides hope.

Many choose to give this time of year through charitable donations. Charitable giving has merit. GIVING TUESDAY IS TUESDAY. There are many worthy charities. Here is my reminder to always ask HOW donated money is being used. Does it go to research? Supporting patients? Programs? Promotional products? Administrative costs? Does the charity support or oppose other causes and beliefs you deem important? If you give money, you have a right to know where it goes. Follow it. If interested, you can give here to UW Carbone where 100% of donations go toward research directed to metastatic breast cancer. Scroll to the bottom of my page to see a video message from me.

Finally, remember to give yourself what you need. I treat myself often because it makes me feel good. It also ensures I get what I want. Care for yourself well. I am no stranger to giving myself what I feel are well-deserved gifts. I take good care of myself in that respect. I will take trips, get massages, buy jewelry, and treat myself to good food. I give myself opportunities to exercise because being as healthy as possible is another gift that no one can give me other than me.

Gifts need to be directed toward something good.

I try to do that.

Winston Churchill’s words ring true today. Giving is how we make a life. I will keep finding a way to make my life by what I give.

Find a way to give. Always.

Balance and Tightropes

A hush falls over the crowd. Lights are dimmed and all eyes in the big top are fixed upward. Suspenseful music keeps everyone in a trance where they don’t dare look away. A man dressed in a white leotard and a billowing white blouse inches across a wire. He holds a long pole stretching out at each side to help establish some sense of equilibrium. Finally, he makes it to the other side. The man bows dramatically to the applauding audience below, but he isn’t finished. He attaches a small round disc to a pole that rises up over his head. An equally bedazzled woman climbs onto his shoulders and positions herself on the circle where she exhibits grace (as well as a lot of trust to her partner) while performing carefully orchestrated yoga poses while the man makes his way back to where he started. The two execute a carefully choreographed dance in a beautiful example of synchronicity, faith, and above all else . . . balance.

Tight rope walkers balance beautifully and skillfully. Their world is high above on a thin steel wire. They make their work look effortless. From below, their balancing act is often stressful to watch.

Our tightrope walkers take their time because it matters to be careful and pay attention to detail. It takes training to do it right. It also takes training for us to walk our metaphorical tightropes successfully. Finding balance in day to day life can be as challenging as on the hire wire.

Finding balance is all about figuring out what you value and then aligning your activities and time spent on those values.

I am clear on what I value and have successfully matched those values to chosen activities. It’s tougher to manage my time so I stay balanced and am not overwhelmed.

Finding balance while living with cancer challenges me almost daily. It seems these days treatment and health appointments are scheduled almost weekly. I spend time on some aspect of fundraising for more metastatic breast cancer research almost every day. Focusing on it can consume a lot of my time. It is exciting, worthwhile, and entirely my choice. It also stresses me out.

How do I fix it? I won’t stop my fundraising efforts. I am getting good results even though it is taking a lot of time. Hard work and effort yield positive results. The solution could involve less blogging, but I don’t want this to be the case. Oncology medical stuff gets a lot of my time. Both blogging and fundraising are taking the majority of the time I have left. I’m not balanced. FYI – if there is a week where I do not post, I am more than fine. It means I just needed a break. Something has to give. It isn’t going to be me.

Spending more time in nature is going to be a conscious effort on my part.

Reading is going to be scheduled, which makes me feel a little too structured, but I need to do it in order to create more balance.

Working out will continue to be a priority.

I am going to schedule downtime and just BE.

Doing some sort of meditative practice again will help. Even if it’s only five minutes a day, the benefits will affect everything else.

Accepting help will also be good. I can think of two examples where I recently did this and I was okay not controlling everything.

One powerful word that I’ve found to give me more personal balance is the word NO. Leave work at work. Respectfully decline an invitation if you have no other plans than not having any other plans. It’s perfectly acceptable to say no without having to explain or justify your reasons. Not explaining is freeing. It goes something like this: “No, I can’t make it. Thank you.” It’s polite and firm. It’s worth asking why anyone really needs more information if you have already said no.

“Balance is not better time management, but rather better boundary management. Balance means making choices and enjoying those choices.” ~ Betsy Jacobson

Holding boundaries I have set with others will absolutely help me achieve more personal balance. Boundaries define what I will accept from others. They reflect how I show love to myself. When I apply the idea of boundary management to myself,  I still believe there is time management involved. How I choose to spend my time and energy is important.

Balance is a mixture of boundaries, priorities, choices, and time. How much of my day is reasonable to dedicate to writing and fundraising? My plans are to exercise in the morning, do whatever my work is that day in the afternoon, read at night. Yes, I’ll need to be flexible, but one day isn’t going to be consumed by anything – unless it’s a medical day. Those are still pretty consuming.

Squirrels know how to balance really well. Those darn creatures scamper across telephone poles with speed and ease. What makes this so? Does the squirrel lead a balanced life? I’ve always thought it must be rather monotonous. All they do is dig and bury things, chase one another, and run on wires. They dash out into roads and dart out of traffic just in time. They try to get into my squirrel proof bird feeder to no avail. Is this the squirrel version of work, play, and risk-taking? Maybe they have it all figured out.

I don’t think squirrels know more than I do. My brain is considerably bigger. I think the telephone wire is much like the sidewalk. It’s all proportional. I don’t fall off the sidewalk just as the squirrel doesn’t fall from the wire. But I still feel like I lose my balance from time to time.

We all lose our balance. It’s inevitable, and when it happens, it’s important to reset to your own vibration and needs and not to someone else’s. A person living well with cancer will be balanced differently from someone else. I know I keep searching for an answer on how this best works for me. It changes a lot.

The goal of finding balance is not to be a tight rope walker walking without a net and balancing someone on your shoulders while juggling bowling balls. The goal of finding balance should be to be mindful of what you are choosing to do with your time and feeling a lightness with those choices. I want to stay in that space where balance and lightness meet. Some call it peace. Some call it happiness. Some call it breathing. It all circles back to loving self-care so you don’t have to feel like you’re walking on a tightrope. Leave that balancing act to the professionals.

Good News

How often does a metastatic breast cancer patient get good news?

I imagine it varies. Writing from my experience, I don’t get good news that often. Bloodwork has been steady and decent. Stability is considered good news. Stability or slow growth is usually how news is presented as “good” in my situation. I want more. I am thankful my news has been mostly good over time. Initial lines of treatments were highly successful. Mild, minute progression was the usual result when these stopped working. Millimeters. Sometimes these millimeters weren’t even considered medical progression. They sure mattered to me. Millimeters add up over time.

Millimeters crush my hope.

I’m still able to do many things. I am active. I’m independent. I also know others have received news much worse than mine. Grief weighs heavily on me when I learn that someone I know in person or online isn’t doing well or has died. That last piece is a huge reason why I don’t share news, good or bad, on social media platforms. Someone always is struggling and the timing never feels right. I don’t share much health news online.

What happens when I do get good news?

I don’t trust it.

I must not understand it.

I don’t allow myself to feel joy because I have to keep myself in check.

It will be taken away if I get excited.

It won’t last.

MBC has done a number on me.

I hope for good news. I pray for it. I try to do whatever I can to tip the scales in my favor. I also have fears and have been conditioned from too many similar reports of minor growth to not expect that is what I’ll hear. Patients with metastatic breast cancer don’t get a lot of good news. I imagine our oncologists don’t get to give it to us very often either.

Well, I got good news. Whatever is ahead of me, this good news can’t be taken away. I understand it. It wasn’t a mistake or some fluke. I held off in getting too excited until I had a face to face with my oncologist to see if our definitions of what good news meant were the same. We are on the same page.

I am feeling joy. I get to feel joy.

My October 2019 scans showed regression.

My largest spot is now a little smaller than it was in 2012 when I was diagnosed.

I have waited YEARS for this kind of news.

Millimeters also make a difference over time when they are being subtracted.

If size is the only thing that matters, then I have regained ground to where I was over seven and a half years ago. Size isn’t the only thing that matters, but that is how I’m framing my thoughts. There are other factors, especially the physical and emotional tolls of treatments, retiring early from teaching, the never-ending obstacles of living with MBC, etc. All news is not golden in my life. Bad news has been hard. These all have had major impacts.

Research also has major impacts.

Research works.

Trials work.

My privacy has always been something I want to protect, and I will continue to be a private person. Privacy is the other reason I do not share much publicly. When others share good news, I always find myself wanting a little more information so I can assess if I may be eligible for their protocol and have a chance for the same kind of good news. This is one time where I will share more details. It may help someone.

I have been participating in a phase 2 trial since February that I was matched with through Foundation One. Foundation One is a lab that does in-depth genomic testing that (as I was told) goes deeper than what genetic testing through my treatment center clinic involved. It looks for mutations. Most of the time mutations are not found. If there is a mutation, there hopefully is also a trial that would target that mutation, as there was for me.

The cancer in my body is identified as estrogen positive, HER2 Neu negative. An activating mutation of ERBB2 (Her2 Neu) gene was identified. This means I do not have too many of the Her2 Neu genes. Having too many would be an amplification and make me positive. I am negative. The issue is the gene is OVERACTIVE and doing the wrong thing. The overactive aspect can be targeted.

I also have a mutation presenting as a variant of ESR1 in my hormone receptors. It is a variant of an estrogen receptor that is not active and therefore means the receptor is ON all of the time. People do not respond well to aromatase inhibitors where this is true. A mutation here explains why previous lines of treatment stopped working or haven’t worked as well. This mutation can be targeted as well.

Herceptin, neratinib, and faslodex are targeting both these suckers.

I’ve traded one batch of side effects for another set. Some have stayed the same. I’ll push on and keep doing everything I can. I pray I can stay on this regiment for the long haul and that it keeps doing good work.

Cancer acts differently in everyone. It can still behave differently in those of us with the same type. I hope those of you in similar situations get good news, too. We all need good news.

There is more work and research to be done, for myself and for others.

Research gives me hope.

I live in hope.