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.

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.