Cancer and Treatment Fatigue

I am tired.

I think we all are tired. It’s no wonder because 2020 has thrown so much at us.

Last month on the news there was a story on what health experts in my area referred to as pandemic fatigue. It refers to people being tired of following recommended safety guidelines so strictly. As a result, they’ve let their guard down in terms of masking and social distancing. There is a spike in numbers of positive cases of COVID-19 where I live. People are being stupid. The local health expert said that through contact tracing they’ve learned people have contracted the virus when they have gone places without a mask. Guards have been let down when in small groups. People have become weary after seven months. Here we are at the end of October and Wisconsin has become a hot zone with numbers in the thousands for positive cases on a daily basis.

I’m tired of masking. I’ve planned a few more outings than in spring and summer because I want to enjoy the fall season before the cold of winter arrives. I seriously considered an outdoor activity where I knew there would be over a hundred strangers who may not be following all the safety guidelines while there. Well, I wanted to go. I’d be careful. It would be okay. I’ve been okay so far. Those were major rationalizations on my end. I decided I couldn’t go. No way.

I know it isn’t a contest between cancer and COVID, but many reading this have lived for years with cancer. The fatigue from years can’t compare to fatigue from seven months. Yet, we all can empathize because 2020 has been a rough year.

The National Center of Biotechnology Information (NCBI) is located within the National institutes of Health (NIH). The NCBI defines treatment fatigue as “decreased desire and motivation to maintain vigilance in adhering to a treatment regimen among patients prescribed long-term protocols.”

Treatment fatigue from ongoing cancer treatments absolutely counts.

I copied this next quote a while ago and thought I had copied the source. Upon finding it for this post, I see I didn’t get the source included. I’m sorry. I have searched in good faith to find it. If anyone recognizes it, please let me know and I will happily edit to include proper credit. With that disclaimer, here is a definition for cancer-related fatigue from someone somewhere:

The medical term for this is “cancer-related fatigue.” It is a feeling of physical, emotional, and mental exhaustion even though you are getting enough rest and sleep. Cancer-related fatigue can affect your daily life. And, some people may experience this kind of fatigue for months or years after finishing treatment.

Months or years after finishing treatment. I will never finish so I must endure.

Different drugs have different schedules of repeating cycles. The schedule depends on what drug is being given. Treatments can happen daily, weekly, bi-weekly, every three weeks, monthly, and quarterly. Oral medication is often prescribed to be taken daily. I believe there is a solid correlation of treatment frequency to fatigue. It’s been that way for me.

Aspects of cancer that are not treatment involved also cause cancer fatigue. There are office visits with an oncologist to schedule, labs involved, and prescriptions to keep filled. Scans and tests get squeezed into non treatment weeks and these depend both on a regular schedule and how things are going. Side effects are carried both visibly and invisibly. Even all the needle pokes for all the necessary reasons gets tiring.

There’s always something.

That something becomes exhausting.

One of the biggest something is when someone in the cancer community dies.

Other big somethings are progression, generalized anxiety, and getting through hard days.

It is just too much.

Breast Cancer Awareness Month has broken me a couple of times this year. I just can’t. I’ve been both reassured that there are always strong forces to keep walking the walk when I can’t and people who say they’ve got me when I need support. These friends recharge me.

Constant advocating wears on me like a frayed pink ribbon. What I do is small compared to the efforts of some of the women I know. I don’t understand how they do it because it appears they never rest. I know I don’t even see all they do. They amaze me and they have made big impacts. I have made a difference but it’s on a smaller scale. The advocacy hat serves a powerful purpose. I can’t wear it all the time.

My body needs time to rest and heal from cycle to cycle of each treatment. Sometimes it doesn’t feel like I am getting much of a break. Especially when fatigue is a major side effect itself. Rather than dissipating, it intensifies. The resting and healing in between cycles is hard on me because I mark time trying to ensure my issues with hand-foot syndrome don’t flare and trying to protect myself from COVID-19. I want to make the most of my time between treatments and I don’t feel I do.

Cancer and treatment fatigue goes beyond fatigue from a treatment regimen. There is emotional fatigue.

I am tired.

It does get harder the longer I do it. Appointments don’t stop. I’m never given much of a break. The grind is ongoing daily. I can never get away from it.

Cancer doesn’t take a day off.

It hasn’t stopped during the pandemic.

And yet, I’ve heard explanations regarding slowdowns said to my face “because of the pandemic” that fall flat on my ears. What I hear is that I’m not important and don’t matter after all. My house continues to burn but the firefighters are fighting a bigger fire.

Managing all my stressful emotions contributes to fatigue. My anxiety over the last eight plus years has increased. High anxiety over a long period of time stresses the body. A person cannot be on high stress mode all the time where they are constantly fending something off. Remember there is always something. I work hard to lower it during scary times so I can find some stretches of calm.

Scheduling my many appointments is another source of emotional fatigue. The schedulers overall do a good job, but they often don’t have all the facts or the facts they have are incorrect. Yet, they are the gate keepers that keep my calendar moving smoothly or create an additional and unneeded obstacle I have to clear. Billing and insurance complications raise the hurdles here, too. Over time, I have collected a couple of phone numbers of people who seem to know how to help me and make problems go away.

Not being treated like a person is one more area that weighs on me heavily.

I am tired of so much fatigue. I give myself breaks whenever I can. I laugh. I eat. I exercise. I enjoy nature. I look for beauty and comfort. And I keep on finding a way.

Always.

Ghosting

No moon is out which makes the night even darker. Your night hasn’t gone as planned. The friend you had plans with never showed. You hope they are okay. They didn’t respond to your text but that sometimes happens with them. You drive home along a lonely country road. There are no messages on the machine when you arrive home. It’s so strange. Shrugging it off, you shower and settle in for what turns out to be a fitful night of unrest. A transparent image of the friend you had plans with flickers in and out of several dreams like a ghost.

You awake with the realization that your friend may just as well be a ghost. They’ve faded from your life.

You’ve been ghosted.

Defiinition: Ghosting – (noun) the practice of ending a personal relationship with someone by suddenly and without explanation withdrawing from all communication.

It is frequently applied to the dating world where one person gradually (or more quickly) drifts away. Some people think it’s an easier way to gently break things off. It may only be easier for the person ghosting. The ghosted can be left feeling haunted because they don’t understand what happened or what they did wrong.

Ghosting doesn’t just happen in dating relationships. It happens often in the cancer community.

I feel there are several reasons why ghosting happens when someone has cancer. Here is what I’m thinking:

  1. They get tired of a sick person. Hmmmmm, I’m tired of being sick. Even though I share more with those I trust, people still have no idea how I feel or the amount of work and planning I need to do to function on a day to day basis.
  2. They want to get back to their lives without disruption. Gee, I’d like to get back to my life before it was disrupted. There isn’t much of my past that glimmers in my present. Talk about ghosts. My former self is a ghost to me.
  3. It’s too hard for them. They are uncomfortable. It’s emotionally painful. Hard? Uncomfortable? Painful? It’s hard for me. I have emotional and physical distress as well. I revert to my response from the first reason I gave – people have no idea how hard I work to be here. Running away and not dealing with an issue isn’t an effective way to problem solve. Not that I’m a problem. Someone’s inability to show up with empathy is the problem.
  4. Some actually come right out and say they cannot cope with another person’s cancer or side effects. I remind them of something they don’t want to hear about or see. Honesty can sting like a bee. Bees sting when they feel threatened. I’m not sure how I’ve threatened people. If I can cope, I would hope for a little support. I need support. I remove the stinger and let the area heal. But I never truly forget.
  5. They were false friends rather than true friends from the start. I understand some people are in our lives for a reason and that reason may be short lived. Some are in our lives for a season. Seasons change. Some friendships are for life. I have a few of those. The false friends I can do without. I can’t count on them. I can’t share with them. Part of me feels relieved to know now rather than later.
  6. Friendships do ebb and flow. The ratio of relationships lost to those gained can be disproportionate when you are living with cancer. Interests shift. What I’m able to physically do changes from time to time. Circles become smaller.
  7. People lose interest in you. I’m old news. Glad to still be here, but my continued living with metastatic cancer is old news. I don’t want to have problems. I don’t want to be talked about or pitied. I don’t want to be fussed about. I don’t want to be ghosted either. I still need support and encouragement, connection and friendship, warmth and laughter.
  8. Friends have died. It’s a grim reminder. I understand why these friends have left even though this reason haunts me the most. Some I’ve known better than others. There is still a bond because you’re all in the same club.

The problem is I miss people who have ghosted me. I have been hurt. Ghosting hasn’t been complete in most cases. It’s friendly enough when I’m able to catch up with long lost friends. It’s just not how it used to be. It never will be because I can’t get away from a disease that’s here to stay.

It’s hard but necessary to let go of relationships and people who are unable to fit into my life. Ghosts are haunting reminders of loss. Living with cancer involves layers of loss. There are days where all I feel I do is lose some more. If I can eliminate the specters of former friends, that is less loss for me to experience. Their transparent bodies offer transparency to the status of the relationship. It’s empty and nothing is there. My focus must be on relationships that work and truly exist.

Are there other reasons why ghosting has happened to you?

The “I” in Patient

We all know there is no I in TEAM.

But there is an I in PATIENT.

I am an integral part of my care team.

I am the reason for my team.

I am the team member who is affected by decisions.

I care the most about those decisions.

I understand my health well.

I know how I feel.

I track my side effects.

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

I take charge of my health.

I don’t accept no easily.

I believe in science and in myself.

I should not be discounted.

I won’t stay in my lane.

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

I advocate for my needs.

I ask questions.

I don’t just have cancer.

I have feelings.

I use my voice.

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

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

Imaging Scheduler: It says here you need a premed.

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

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

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

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

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

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

My frustrations were understood.

Right.

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

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

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

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

I am a patient.

Listen to me.

Include me.

Value me.

Merchandising Cancer

I am pretty sure I’ll offend people today.

I offend myself. I have reservations if I should even post what I’ve written. It looks like I have despite my doubts.

I know my thoughts surrounding merchandising cancer have an angry tone. I am not sorry for it and won’t apologize. I get to feel angry that people make money off a disease that kills. I get to feel angry that people buy t-shirts and mugs rather than donate directly to research. I get to feel angry that I put myself through agony in an effort to change even one person’s attitude about breast cancer merchandise.

Offensive Section

Are you someone who feels okay with pink ribbon shirts? Somehow these are big business whereas merchandising other demographics would be abominations.

Think about these scenarios:

Alcoholism and drug addiction merchandise. Those who conquer these demons work hard every single day. It just isn’t necessary to wear their sobriety on their sleeve. Chips are awarded as small recognition for major achievements. The first chip is earned after 24 hours. It’s not a market for profit. April is designated as Alcohol Awareness Month but it doesn’t garner the same kind of attention that cold beer at sporting events attracts.

Where are the COVID shirts? It’s current and global. Or would those be in poor taste?

Yes, they would be in horrible taste. Sadly, there probably will be some that eventually surface. Maybe they already have. The 200,000+ who have died won’t be given a second thought. The global death toll has topped over a million.

Where are the shirts featuring funeral homes, coffins, or grave markers? We all will use these in some form or another at some point. Why not celebrate it with cute shirts? People wouldn’t have to worry about what to wear to funerals. This captive audience isn’t being targeted.

Because it’s wrong, offensive, sick, and unthinkable.

Pinkwashing

Pinkwashing is when a company uses breast cancer to promote itself and its products or services. Often there is no support of breast cancer charities at all.

None of what I suggested should be merchandised. Somehow though, it’s allowable to profit off cancer.

You may see pink. I see death. I see the coffins and the funerals. I see visits to cemeteries. I don’t understand why someone needs a shirt to celebrate every day in October. I have read such stories from people who own a pink shirt to wear each day in the name of awareness.

A t-shirt typically is priced around $25. It totals $775 if you have a different one for each day in October. Ask for a donation to cancer research and it sounds like a bizarre idea to some because nothing tangible is gained from donating.

Facebook Comments

I see too many ads on Facebook that have around 2 thousand comments. Merchandising cancer is a business, pure and simple.

 If two thousand people put $25 each toward metastatic breast cancer research, it would total $50,000.

The following are actual comments from Facebook with names removed. They all push my buttons in some form. My takeaway is there are an awful lot of people who easily fall prey to a pretty pink product and pink messaging and all the pinkwashing that Pinktober brings.

Sending prayers to all my tired 6 years ago but I won …hang in there lady’s you can beat it to

(We all make an occasional typo, but lack of punctuation and correct grammar makes this hard to decipher. This is how the comment was written word for word.)

Be strong you! You can order this shirt here:

Omg love this….. it’s so true!!9 years and counting.

Love this shirt! I need this!!!!!

I need this for October which is breast cancer awareness month

My daughter is fighting right now she has her last chemo treatment on the 17th this is what she would say. I just pray we can say it’s gone and she can ring that bell… god bless you all ❤️❤️

OMG I NEED THIS SHIRT!!!!

So cute!

Beautiful

Fight!Fight!Fight!!!!

ABSOLUTELY love this, I’m a 35plus year Survivor, I’m getting this 

I am in that fight myself, but I have God on my side.

Quite a few just type words like blessings, prayers, hugs, or use several prayer and heart emojis.

There are a couple emojis I have in mind that I am tempted to use. Yes, those.

I’ve ranted on a few of these sites out of frustration and anger. I don’t think it does much. Direct replies to others’ comments are my new strategy. By focusing on individuals, I hope to make a difference one by one. Information presented without my angry tone may be more effective. I don’t mind if anyone reading wants to join me and use my comments.

Here are a few of my attempts:

I can understand if wearing a shirt helps you feel strong right now. None of the proceeds from these shirts go to breast cancer research. I feel strong when I advocate and donate for more research.

Have you considered donating to breast cancer research? Thank you if you already have.

Nothing from sales goes towards research. Nothing! If two thousand people put $25 each toward metastatic breast cancer research that would total $50,000. Is wearing a “cute” shirt that “you have to have” really the way you want to go? There’s nothing cute about cancer. Having this shirt does nothing for research. Many thanks if you’ve donated to research. Always check where your contributions go and how they are used.

A more recent trend has been for people to comment on their breast cancer status and their diagnosis. There is no mention of their interest or thoughts on the advertised shirt. The comment is entirely focused on their personal experience. These folks are looking for a support group. I fail to see the connection to an ad campaign where their experience has not been solicited. These comments usually get a comment from the company as a reply with a link to order the shirt. That is really inappropriate. It’s especially low when someone has commented someone died from cancer and it’s clear they are in pain.

Businesses profit off cancer. They don’t care.

A charity or fundraiser makes money to benefit cancer care or research. They do care.

Is there a place for pink?

Are all shirts and other pink merchandise inherently bad? No. I will admit there are a few I like that convey hope. I still won’t order one based on principle and my goal to support research. I understand there are people who buy them in the name of advocacy and believe they are promoting awareness by wearing them. Maybe they have. I have yet to read a valuable comment that connects wearing the shirt to advocacy plans.

I am not against awareness. Walks and runs are important. They give hope and a sense of agency. They raise money. Fundraiser dinners and events do the same thing. Awareness must be tied to action that directly supports the cause and purpose at hand.

I am also not against pink. There are several women I know who have used it for the right reasons and recognize the metastatic community is part of their work. I am grateful for them.

If t-shirts were the answer, I would have been handed one upon diagnosis and sent on my merry way. Pinkwashing makes me blue. Mostly red with anger. Merchandise isn’t lifesaving. Merchandise lines the pockets of the business executives. Merchandise follows demand. I dream of the day when there is no demand because there are cures for all cancers.

Research can save lives.

Not pink.

Math, English, and Cancer

During the summer of COVID-19, I commented on a riddle posted by a friend on Facebook. I answered correctly and reposted it as part of the deal. Things got crazy after that with the many answers I received. Psychology papers could be written on behaviors from analyzing the way people responded. I found these reactions more fascinating than the answers people gave.

Here’s the what I posted:

Why did I participate? I rarely partake in social media challenges and group activities that involve my committing to share with others. I try to stick with content that involves me directly or issues that are important to me. So, why this one? It was fun. I read the problem carefully and figured out the tricky parts and was pretty sure my answer was right. I like being right as much as the next person. It was also something to do that I hadn’t done before. I have found myself bored at times during the pandemic. That’s my story and I’m sticking to it.

I am not here to fault those who were incorrect. Notice I’m not sharing the answer as it’s not important. I am not going to respond to guesses left as replies. You can check Facebook if you need to know the answer. My focus is on human nature. I am not a psychologist. My only qualifications in offering my opinions are as someone who has observed a lot of people informally as we all have.

These opinions are mine:

Q: Why did some comment once, accept they were incorrect, and move on?

A: They thought about it and then forgot about it. They just weren’t into it. They had other interests.

Q: Why did some answer multiple times?

A: They were into it and couldn’t let it go until they knew the answer or died trying. Both resilience and insanity cover these folks. Naturally, anyone who both reads my blog and answered several times has categorized their behavior as determined and resilient.

Q: Why did some comment privately and not post their answer to be seen by others?

A: Privacy is a treasured commodity these days. Some people are more private and don’t like posting publicly.

Q: Why did some who were correct write their answer in the form of a question whereas so many who were wrong committed to their answer decisively?

A: Perhaps these folks were humble and modest. Perhaps they saw the long list of incorrect answers and felt a wave of insecurity. What struck me as curious was not one of the wrong answers had a question mark after it. It was only a few of the correct ones that answered using a question mark.

Q: Why did some bring in other people who critiqued the language of the question when their initial answer was incorrect?

A: Tone is hard to detect sometimes in writing, especially in texts or quickly written comments. I couldn’t tell for sure if one person was insulted or not that her response and reasoning were deemed incorrect. Her fellow supporter backed her up and I thought they were planning to take it to whatever higher court they could find. I discovered she was even having conversations about it on her own timeline. I hope this means that she is passionate about puzzles. She would have made a good lawyer. Maybe a detective.

My opinion is some people made the question far too hard and introduced variables that didn’t exist. There were no lions hunting that day. Everything happened in linear time and in the same general setting. But hey, it is 2020, and I suppose a parallel universe exists for riddles. One friend I taught with asked me when I was going to share the right answer. I wasn’t planning on it per how I interpreted the directions. Only those who got the right answer would know so they could have the honor of posting. I decided to go ahead and post it simply because I felt bad repeatedly telling a couple people they were wrong. A bolt of lightning wasn’t going to strike me for going against the rules. It wasn’t a big deal. One childhood friend commented afterward that there had been family debates and involvement from neighbors. I guess that means I’m not the only one who has experienced some periods of boredom with life as we know it these days.

Again, I find it all fascinating. Rarely have I posted anything with as much interest and interaction. Posts about cancer haven’t received the same attention and level of response. Honestly, that frustrates me because this riddle doesn’t matter one bit. Cancer sure matters but too many keep scrolling past those posts because they aren’t “fun” posts.

Math is concrete. Even if there are equations with imaginary numbers and unknowns, answers are still derived. I love math. I no longer have the quadratic formula memorized, but it was used regularly in younger days. As a teacher, I loved teaching that there were multiple ways to arrive at the same answer. We learn to do a long math problem methodically and break it down into parts. We go back and find our mistake if something doesn’t add up.

English and words can be up for more interpretation. There can be ambiguity. Some words have subtle differences. As readers, some of us are more apt to read something quickly and miss needed information. The thing is we often don’t know we missed something and we don’t go back and reread. I miss information. I missed information in a novel my book club read that was provided in the first chapter. Hence, I was sure this big event was going to happen in every chapter that the author let readers know was going to happen toward the end of the book. I didn’t catch it.

So, I wonder . . .  is cancer more like math or English?

There are some absolutes like with math. Math is used in formulating treatment drugs and prescribing the needed amount. Tumors are measured in terms of millimeters and centimeters. Statistics are applied to the probability of very early stage cancers not returning after treatment. Drugs for metastatic cancers come with an average number of months without disease progression. Studies and trials contain graphs upon graphs of data. There is math involved with my oncologists, nurses, and the pharmacists that I know nothing about. There are a lot of numbers in cancer. Mathematical oncology applies computational models to help understand cancer development, growth, and reaction to treatment. I do not pretend to understand but seriously question if it may be used to prevent a patient from trying a treatment because the math doesn’t support it. It would be the worse case scenario of someone being reduced to a number and not a person with other important factors influencing a treatment decision.

Cancer can also be like the English language (or any language). Anyone who has had cancer or lives with cancer has a unique story to tell. My story is different from yours. There may be similarities, but we’re each our own storyteller using our own lexicons to share our stories. Our myriad stories convey hope, sadness, love, fear, joy, and anger. We speak and write of the factual details of cancer. Whether spoken or written, our words express anxieties that come with scans and office visits. Stories are emotional. Life is quite a story.

A cancer story isn’t understood by everyone. I understand not everyone understands what the word metastatic means. Reporters should if they are covering a story concerning it. They need to know it can’t be cured. Nurses need to know. There are different interpretations on what chronic means when referring to cancer. Just to be clear, Stage IV cancer isn’t chronic. Chronic means you have a manageable disease where you can still reach a normal life expectancy. We aren’t there yet. I want it to be chronic as much as anyone. Is it correct to refer to someone who is metastatic as a survivor, thriver, lifer, or another term? It gets complicated because individuals prefer what they prefer. Words can push buttons. Words that push mine are journey, cancerversary, and words describing cancer as a battle. For example, people don’t lose their battle. Saying that implies they are losers because they died. Utterly wrong. They died and it’s awful.

Then there’s the human nature element. Some of us may be more vocal whereas others want to comment privately. Some got it figured out on the first try and some kept trying over and over and over again. There are those who will advocate assertively until the right person shares their interpretation of data. Some of us will keep trying. If one solution doesn’t work, we will keep hammering away at it. We all have different ways of approaching a cancer experience just as there were different ways to approach a number story. We are all different. We are alike in wanting an answer.

Unfortunately, cancer is still a riddle. One that needs a definite answer.

More Thoughts on Identity

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

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

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

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

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

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

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

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

I AM loved.

I AM me.

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

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

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

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

Cancer – A Master Thief

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

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

The tornado is a defining moment where everything changes.

Cancer is a defining moment.

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

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

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

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

Dorothy returns home as we all do.

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

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

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

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

The business of cancer really screws with identity.

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

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

Cancer steals identity.

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

Cancer is a master thief.

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

But how long will she stay?

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

“Over The Rainbow”

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

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

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

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

I sincerely hope you were humming if not singing. 🎶

Morning Yoga

I want to stay as healthy as possible so I can do the things I want. It’s been harder lately as I’ve experienced some side effects in my feet and hands that make moving not fun. I believe they will improve. I believe I have some control. Who knows if I do or not, but I like to believe I do.

Belief is powerful.

We become what we believe. Beliefs become our words and actions. Keep in mind I don’t believe I brought on a cancer diagnosis by my thoughts or actions. No blaming myself. Belief is part of my personal treatment wheelhouse. I believe I can maintain my health. Staying active is the action to match that belief.

My oncologist told me not to alter what I was doing as a means of preventing some of these uncomfortable and at time painful side effects. I’m not sure she fully understands how intense I am. I don’t look super athletic. I’m not. Yet, I push. I sweat. I make decisions I question once I’m well past the point of no return. I woke up the morning after my first cycle of Doxil and felt so good I walked four miles in the heat. I wake up extra early on the days of my treatments so I can get a good workout done before I go and spend the bulk of my day at the hospital. I exercise even on my down days. I choose easier work, but I still choose something. She repeated her advice not to limit my activities the day I went in for my second cycle.

With her guidance in mind, I’m still keeping up my activities, but I’ve taken it a little easier for several days after treatment and integrated more yoga into my routine. The chemo care sheet says not to create extra friction on hands and feet for up to a week after each treatment. I see yoga as a way to work on core strength and flexibility while also quieting my mind. Yoga can grow my inner strength in addition to my outer strength.

Usually, I don’t stick with it very long. I feel tired after thirty minutes and not incredibly successful. I would improve if I practiced poses more as part of my practice.

I never did yoga outdoors until one glorious morning. I didn’t think I’d like it. I felt too self-conscious. Heat and bugs would bother me. But I went for it and loved it.

No heat and no bugs made my yoga time feel more refreshing.

I love that I still have new things at this point in my life.

I’ve been rising early on Sunday mornings, even earlier than on weekdays. On this particular day, the forecast was to reach the upper 80s. Hot weather is not my cup of tea. I wanted to get my workout done before it got too hot and definitely while my patio space was still in the shade.

Thoughts of the back yard I created wandered through my mind as I practiced. I admired my red bee balm knowing I was responsible for planting it. A hummingbird visited while I was out. I see them often enough due to the flowers in my garden. I always take it as a good sign when I see them. Cardinals, mourning doves, chickadees, and robins filled the air with their singing. Dew glistened in multicolored glints off the green grass. The outdoor air felt good on my skin. My senses took in my environment.

Other than myself, there were no people and no people sounds. I was alone in this piece of paradise for a few moments. I felt total oneness with my surroundings. I noticed close to a dozen different shades of green.

There was an insane level of power and peace at the same time.

I held poses much longer than I usually do in my wellness area in my basement. My commitment was to do what felt good and not commit to a set time. I did everything I wanted and practiced a little over an hour.

It was a time I could consciously focus on my breath.

Breathe in. Breathe out.

Cloud watching was included as some breath work. Lying flat on my back and staring upward was a good rest from some hip extension work. I love watching the sky. Cirrus clouds brushed the sky. I looked for animals as shapes drifted by slowly. Somewhere in my childhood was likely the last time I took the time to see the sky from this perspective. I’m looking forward to doing it again.

When I finished, I walked in the grass barefoot. It was more needed sensory work. I am someone who has always liked something on my feet. I’ve never been a barefoot kind of gal. The dew kissed grass was too much for my toes to resist. I walked slowly and each step became part of a reflective meditation.

Maybe I used my hands and feet more than I should have. Shoulding is a horrible business. I was told I could operate business as usual. So far, my feet seem to be faring better than my hands. My palms look shiny and waxy. They are a bit red in between my fingers and have peeled very minimally. I did them in a couple weeks ago wringing out water from towels when my air conditioner broke and my furnace leaked. I cleaned it up because that’s what needed to happen. In addition to the cost of a new air conditioner, it cost me my hands. Every crease where there are joints on my fingers are red, stiff, inflamed, and painful. I’ve been using a ton of lotion on my soles and palms. Days of not adding extra stress to them have helped more than anything. It took about ten days for my hands to heal so they don’t hurt. The joints still feel leathery, look different, and flare up after treatment or when I overdo it. I will continue to practice good self-care.

Until next time – Namaste.

Two Years Blogging

My second year blogging is in the books. I’ve explored expressing myself a bit more through personal narratives and even poetry. I’ve covered a variety of topics. I hope I have made connections with readers as I’ve shared what goes through my mind and in my life as someone living with metastatic breast cancer.

There’s no need to have cancer in your life to read it and get something out of it. Not everything I write about is specific to the cancer experience. Themes of fear, trust, and identity apply to all of us. Memories of joy or moments that teach an important life lesson reside within all of us. However, it’s often when I appear to veer off the cancer path with my writing that I come back to say something about the cancer experience. Maybe I’m only speaking to me. Joy is important for anyone with metastatic cancer. Memories can be bittersweet, hopefully mostly sweet. Life lessons help us embrace the now. Some of these lessons are difficult to embrace. Maybe they help us understand our now one lesson at a time.

I am always interested in growing my audience. Please share my blog with anyone with whom you think may benefit from it. I also want to take a moment today to thank you for reading and sharing your comments. I love reading them and you are always welcome to leave a comment at the bottom of these posts. Today, I’m interested in if you’ve had a favorite post over the last year. I have many favorites, but know I am biased.

Recently, I received a few compliments on my blog’s title, Finding A Way. It conjures up many thoughts in my mind. If at first you don’t succeed, try, try again. If there’s a will, there’s a way. Look at a challenge from multiple perspectives. Approach something in a new way. Venture outside of your comfort zone. Find a way to get it done.

Find a way.

There have been some remarkable things I have attempted while living with metastatic breast cancer. I figured out how to keep teaching for four years after my diagnosis. I’ve discovered new ways to enjoy exercise. I’ve developed hacks for when things are hard. I’ve found a way. Maybe it isn’t always the best way or the easiest way, but it is a way.

The phrase “finding a way” is defined as having an opportunity, or an intention, to arrive at a specific outcome. That definition fits the vision I continue to have as a mantra in my life. My blog’s title got me thinking about other expressions that are essentially synonyms for it. It turns out there are dozens of substitutions. Some fit better than others. Some were noted as more common in the UK. Some are positive. Quite a few have negative connotations and that surprised me. Apparently, finding a way can be by hook or crook. Wordhippo.com is my source. See what you think.

Synonyms are listed in no particular order but tend to follow the order from Wordhippo. I understand if you skim them since there are many.

Getting, contriving, arranging, engineering a way, managing, succeeding in, organizing, working it, fixing it, compassing, coordinating, designing, maneuvering, swinging, swinging it, setting, orchestrating, making arrangements for, fixing, fixing up, setting up, pulling strings, pulling wires, sorting out, seeing to, finagling, framing, negotiating, machinating, manipulating, finessing, masterminding, elaborating, developing, executing, shifting, angling, cogitating, achieving, projecting, jockeying, hitting upon, carrying out, playing games, effecting, wrangling, passing, plotting, scheming, devising, conspiring, intriguing, conniving, colluding, planning, hatching, cooking up, operating, being in cahoots, collaborating, hatching a plot, concocting, faking, fabricating, rigging, forming a conspiracy, laying plans, shamming, abetting, exploiting, manufacturing, promoting, getting in bed with, coming up with, controlling, falsifying, simulating, feigning, conducting, handling, bringing about, pulling off, conceiving, constructing, staging, scamming, doctoring, tricking, wheeling and dealing, and conning.

The list goes on, but I think I’ve listed plenty.

One word that didn’t appear that struck me as strange:

Believe.

Finding A Way is about believing. Pure and simple. Unwavering. Unconditionally.

Shall I change the name of my blog to embody ideas of conniving, plotting, or scheming? Nah, it’s better to stick with ideals like succeeding, achieving, and developing. I will keep the title as is. It works. Onward to a third year of finding a way. You know what’s coming . . .

Always.

Ice Cream Memories

Good memories are sweet like ice cream.

My ice cream specific memories from past vacations are vivid enough to eat.

Dippy’s is a small ice cream shop in Fish Creek, Wisconsin, offering about 20 flavors daily. It’s a simple whitewashed building for to go service. There is a small porch outside with patio seating for relaxing and looking at the flowers and passersby. An old-fashioned red popcorn machine is positioned just outside the door for those preferring kettle corn reminiscent of movie theater popcorn drenched in butter flavoring with lots of yellow food coloring.

Dippy’s was a place to take a break from all the other relaxing being done on vacation. It was a good mid-afternoon or early evening treat. The fact that it was a few mere steps from the corner hotel where I stayed didn’t hurt.

There is something about an ice cream store that makes me feel like a kid again. I thought this was as true for my mom as it was for me. She would sit in front of the store in one of the wrought iron chairs wearing her shorts that came to her knees with a smile from ear to ear. She possessed something childlike even though she was into her seventies.

She always apologized that she couldn’t share her butter pecan or turtle ice cream because of my tree nut allergy. It didn’t bother me for the same reason I never offered to share my ice cream with her. All free sampling was done inside at the counter.

Rules are rules.

My grandma enjoyed ice cream into her nineties. Grandma would have a bowl of ice cream often during the evening on the farm. One thing I’m completely convinced about is the existence of an ice cream gene and that I got it.

Both my maternal grandmother and mother died from metastatic cancer. My grandma was diagnosed with liver cancer. She didn’t go through gads of scans to see if it spread and chose not to do treatment. She was 96 years old and only lasted a few months after the news, so I don’t think it’s unreasonable to believe she had metastatic disease. Anyway, genetic testing has revealed zilch in terms of the metastatic breast cancer in my body being inherited. I wonder if research hasn’t yet discovered the link.

Back to happy memories of ice cream because those memories make me feel happy. They take me back to a simpler time that was relaxed and unrushed. A bit of that feeling is captured whenever I enjoy a scoop or two. Sometimes those memories take me back to as recent as last week and other times much further.

Some memories take me back to summer nights in early childhood. People sat outside after supper just to relax. My sister and I would sit on the front step of the house in the humidity enjoying a bowl of ice cream before our bedtime stories.

In my childhood, I was a chocolate or vanilla person. Discovering mint chocolate chip made me feel pretty sophisticated. I still love mint chocolate chip, but favorite flavors also include cookie dough, coffee, and chocolate peanut butter.

Chocolate peanut butter was recently enjoyed on a lovely summer day.

I love moments of simplicity. I’ll take every single one I can get living with metastatic breast cancer. Memories that make me smile are delicious. That’s true whether I’m sitting on the front stoop as a child, outside at Dippy’s, or sitting along the waterfront outside Wilson’s Restaurant  in Door County slowly working on a double scoop while watching the sun dip below the water. It holds true if I’m home enjoying a dish.

Even Snoop Dogg knows ice cream is a good thing. Only Snoop knows his plans for the future, but maybe he was serious when he said, “When I’m no longer rapping, I want to open up an ice cream parlor and call myself Scoop Dogg.”

He would get no complaints from me.

Is all this just about ice cream? Yes and no. Sometimes ice cream is just ice cream. Ice cream is surely one of the better things in this world. You’re never too young or too old for it. There is a flavor for everyone. It’s a simple pleasure.

It also can be a metaphor for life.

Ice cream melts quickly.

Enjoy it before it’s gone.