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.

Summer Challenge 2020

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

Here are my responses to her questions:

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

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

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

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

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

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

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

Share two of your best blogging tips.

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

What is one of your blogging goals this year?

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

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

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

What is a dream you have for your blog?

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

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

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

Dodgeball 

Research Lab Tour

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

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