Hope and Nature

2021 got off to a rocky start for the United States when a riotous mob stormed the Capitol in an attempted coup. This happened on the cusp of all 2020 gave the world. A friend of mine shared how she went for a walk to walk off feelings of despair she felt in the wake of recent events. Beauty surrounded her. She explained that she came across smiling strangers who offered greetings, children laughing and sledding, and sunshine breaking through the clouds. Walking often clears the mind and changes perspective. My friend returned home feeling better, reminded that lessons from nature make us stronger.

Wow. I decided I needed to head out to the nearby arboretum myself the next day and look for signs of hope in nature. I was not disappointed. Signs of hope were plentiful in my surroundings. Several inches of snow covered the ground. Tracks from small animals, skis, and walkers left trails to be followed. I see hope in snow because it assures me winter is how winter should be. It is a time for parts of nature to rest. Thousands of trees surrounded me. Some trees had rough bark with lots of texture, others were smooth. I always feel protected among so many trees. I know they are still alive in winter and just conserving energy. Their continued cycle of life is hopeful. I heard geese as they flew overhead. Signs of life were all around, and where there is life there is hope.

I even saw signs of spring. Literal signs near one of the entrances. Spring is perhaps the season filled with the most hope through births, blossoms, and the return of animals that have migrated. It will be months before these return but spring will come.

The people I encountered were friendly. It’s always what I find there. Waves, smiles, lots of good mornings. When I see images of people in the news who are hateful, dangerous, and destructive, I’m filled with despair. Spending time outside is good for me. It’s fresh air. I’m moving. I’m away from the TV and the news. Having interactions with humans who are polite and seem positive are meaningful to me even if they are brief. Hope in humanity is restored in small doses.

Of all the things I noticed around me, a slow realization began to build.

The greatest signs of hope I found were within myself.

  • I was in charge of my day doing exactly what I wanted.
  • I had control. I felt agency. All decisions and actions were entirely mine.
  • I could feel my heart beating inside my chest. I could hear myself breathe. I was fully alive.
  • I wasn’t just walking. I was briskly walking. My stride felt like I could break into a run or I could lift off and fly. What the heck was going on with me? Times when I feel well will never be taken for granted.
  • Moments in the now are filled with hope.
  • I thought I could walk for hours. My energy was boundless that week which I welcomed like a warm fire on a cold night. I liked seeing what I could achieve on a week when I felt like me. I capped my walk at an hour because I occasionally do more than I should, and I wanted my feeling of success to stay with me. Success breeds more hope.
  • I felt strong.
  • I felt my spirit.
  • I felt my will.
  • I felt healthy.
  • I felt at home.
  • I felt gratitude.

I felt all of these on a grand scale. Each gave me hope. Treatment resumed last week for me, and I carried hope with me. Hope is a necessity living with metastatic cancer that at times wears thin. Some days I run on fumes. Regular boosts are as essential as chemotherapy. The side effects from hope are a lot better, too. Those are all listed above. Nature provides hope every time. I look to the sky, clouds, sunshine, snow, and even rain. It’s in the trees, flowers, and wildlife. I feel it in the breeze. It is there in the stillness. Look, listen, and feel for it.

Hope is within each of us. It’s our nature.

Allergic Reactions to Chemotherapy

I’m allergic to tree nuts and people nuts. It’s much easier to avoid the tree nuts. I wonder (often) if I’m the nutty one. Perhaps these are stories for another time. Today, I share what happened at a recent treatment visit.

Chemotherapies, hormonal therapies, and targeted therapies can all cause allergic reactions. This is true for just about any medication. Mild reactions involve rashes, hives, and itching. More serious reactions include nausea and vomiting, difficulty breathing and swallowing, and swelling of the face, eyes, or tongue. Anaphylaxis is the most severe allergic reaction.

I switched to a new chemotherapy last month – Taxol / paclitaxel. I received it over eight years ago as part of my original regiment. I have mixed feelings about returning to Taxol. On the plus side, it worked incredibly well for me. On the con side, I experienced a lot of flushing and I was hot and cold at the same time. I had insomnia. Lots of nausea. There were muscle and joint aches. A heavy schedule of steroids accompanied this regiment and those caused increased appetite and weight gain. I looked puffy and put on a good twenty pounds. Fatigue, fatigue, fatigue. Of course, there was hair loss. I even wound up in the hospital due to a nasty pneumonia I managed to develop with shingles at the same time. I’m giving it another go. See what I mean about possibly being the nutty one?

I took my large doses of steroids at 10 PM the night before and 4 AM the morning of chemo. Surprisingly, I didn’t have sleep trouble as I thought I would. I figured I may as well stay up when I took the early morning dose since food was recommended and I doubted I’d fall back to sleep.

I spent my extra time with a good weight and cardio workout, followed by walking. I had over two miles in before I left the house. I wanted to make the most of feeling good before feeling crappy and more crappy took over. I felt like a boss going into my day.

All went well at the hospital. My labs were excellent, the best they’ve been in some time. My office visit was positive and upbeat. A medical assistant not assigned to me came in and spent a few minutes catching up. I hadn’t seen her in a while and she just wanted to say hello. Small kindnesses like this are so appreciated.

Treatment even started fine. I liked Brittany the nurse who was assigned to me. She attended a hot yoga event I planned as a fundraiser much earlier in the year. It created an instant bond for me. Those bonds are important because I know I am thought of as a person and not just a patient. I was given a bed which is standard for new drugs in case there is a reaction. Not only did I have a bed, but I got a big room with plenty of space for all my stuff that comes in tow with me. I even had a private bathroom where we could put on my cold cap. I felt I had a suite for my stint at the chemo spa.

I use a cold cap and hope to save my hair with it. I pre-cooled longer than necessary at my request because I wanted my scalp to have a little extra boost. A couple of other nurse friends popped in to visit. Denise gave me a beautiful painted rock with a chickadee on it because I had a rough go the last time I was there when I learned I had to switch drugs. She requested it from a friend who paints rocks not knowing chickadees are my one of my favorite birds. This dreaded day was going far better than expected.

Brittany returned to start the Taxol. The protocol followed is for the nurse to stay for the first 15 minutes of the total 60 of the infusion. An allergic reaction would most likely happen in that time if one were to happen. I had no symptoms. I didn’t feel hot or itchy. My breathing was fine. Swallowing was fine. All my vitals were excellent with my oxygen in the 98-99% range. I attribute it to the merits of a solid workout. Nothing was abnormal.

As required, I was given lots of Benadryl through IV. It’s also a precaution for a potential reaction. It made me drowsy. The only comfortable position for me was to lie back with pillows propped around my head. My head was titled back far but it was comfortable, and I felt I might doze for a good portion of this process. So much the better. The bowling ball of a cold cap I wear on my head diminishes most feelings of real comfort. I finished my hour infusion and moved on to the post-cooling phase. I got unhooked from the IV pole and moved to the nearby chair so I could catch up on some laptop work. It would pass the 60 minutes I needed to cool with the cold cap.

Toward the end of this time I happened to touch my throat and felt a bulge. I read later in my treatment notes it was the size of a golf ball. There was also swelling that seemed to extend to other parts of my neck. Uh oh. Immediately, I pressed the call button. Brittany agreed it was not good. I answered lots of questions. I had no other symptoms. My breathing was good and my vitals were all still excellent. I could drink water smoothly without swallowing difficulties. My voice was a little scratchy. That was possibly bad, but I make an effort not to hydrate tons while there because I don’t like being unhooked from the scalp cooling machine for even a few minutes to use the bathroom if I can help it. There was a plausible explanation for my voice not sounding like usual.

A wrench was now thrown into an otherwise successful day. An allergic reaction was the likely cause. It didn’t seem too bad. I cried briefly because some stupid thing always seems to happen to me. I was no longer a boss. I was hooked back up to my IV and shot up with more steroids. No Benadryl as I drove myself. I was observed for an hour and there really was no change in the size of the bulge in my neck or swelling.

Over the course of that observational hour, I thought about what I had at my disposal to speed things along. I had ice in my lunch bag. It was too hard and unmalleable to my throat. My frozen drink was still cold and the perfect size. I could roll it from the top of my throat down and it felt good. I thought I was getting results after 5 minutes. I knew I was after 10 minutes and the swelling had gone down.

Brittany returned with the decision that I could go home but I needed to call 911 if anything changed. I told her I had iced it and we agreed the swelling had gone down a lot. I was glad to hear I could go home because I had also decided I was leaving. I arrived by 8 AM and didn’t leave until around 5 PM. I was exhausted, hungry, and confused.

I wasn’t really sure what had happened. It just didn’t fit the mold for a classic allergic reaction. Everything was back to normal by 7 PM that night. I’m weird in terms of unusual or delayed responses, but I still don’t think this was one. There were no internal symptoms (other than the swelling) that showed up like difficulty breathing or swallowing. My vitals remained normal. I figured these would fluctuate if I were allergic to something. The timing was off. Ice wasn’t going to resolve an allergic reaction. Drugs would. Plus, pretty much the exact same thing happened the following week during the pre-cooling phase before Taxol was even given. My money is on the cap and the chinstrap tightness. After a discussion with the capping company, they agreed improper positioning of the chinstrap was the likely cause. My bad. It would be lovely to have something like that checked by qualified staff. The mask covers the strap, but still.

The small possibility exists of something going on drug wise that no one can figure out. What happened wasn’t desirable at all, but it supports two common phrases in the metastatic breast cancer community: There’s always something. And the something can always be worse.

I seem to have my share of somethings.

Heavy Breathing

I have a friend who works as an administrator in health care. She often shares with me aspects of wellness activities that are part of her work. Recently, she told me there had been many long days at the hospital due to all the planning that goes into protecting staff and patients from COVID-19 while ensuring the hospital and other facilities still operate effectively and safely. It’s a very demanding job, yet she describes it as also being a highly supportive work environment. She has shared with me creative challenge questions they are given each week. One week each person needed to share a sound that made them feel productive. She said it made people more mindful of the sounds in their environment all week long. A little extra mindfulness can make an enormous difference these days. My friend chose the sound of cutting fabric. She is a talented quilter, so this sound made sense even though it wasn’t related to work.

She also shared she liked the sound of a three-hole punch. A three-hole punch fits into her world of many papers at work. As a teacher, I liked the three-hole punch, too, although I think this friend likes it more. I still have a three-hole punch but rarely use it. It has a definite sound of accomplishment. It’s the precursor to placing final papers in a binder. I love binders but they are pretty quiet office supplies.

What would I have chosen as a teacher? Would I have chosen the morning bell announcing it was time to officially start my day with my second graders? Maybe the ending bell was a better indicator of a day filled with work, learning, and productivity. A pencil sharpener evokes mixed feelings. Often it was used to give the illusion of working hard when hardly working was the more likely scenario. Other times it represented the definite hum of worker bees in the hive of learning.

None of those sounds fit my present life. I still like the sound of an electric pencil sharpener. A newly sharpened pencil makes a soft scratching sound as it scrawls across a sheet of paper. It’s hardly perceptible but it’s there. I don’t do tons of writing by hand. I gravitate towards pens over pencils when I do. Even now as I type away, the keyboard clicks in a rhythm of spurts. Words appear, but I’ve never equated the sound of typing as being especially productive. I’ve never paid any attention to it. I’m being mindful of it now but think of it more as a means to an end. It’s the finished piece that makes me feel productive and that has no sound. When I’m done, I’m just done.

My home is pretty quiet. TV or music provides background noise. I’m not producing either of those. I don’t cook a lot, so the cooking sounds of mixers, knives slicing on cutting boards, and timers going off aren’t sounds that work for me either. I like the sound when it’s quiet. Silence has never bothered me. Seldom is there ever truly no sound. The clock that hung in my grandma’s kitchen ticks away in mine. I can hear that from the rooms off my kitchen. I find it reassuring. Comforting. Constant. Centering.

I enjoy being in nature where I can listen to birds sing and leaves rustle on trees. I can hear the wild turkeys forage as they move slowly in a cluster. A strong wind is exhilarating if it isn’t pushing against me. I’m not making any of these sounds. I just take them in and let them fill my soul.

How am I productive? What do I really DO anymore?

I’m a professional patient. Most things during treatment are done to me, not by me. Sounds are not any result of great productivity on my end. I sit the majority of my time at office visits and treatments, only walking to get from one area to the next. The infusion machine beeps when there is a problem or my infusion is done. I hear the whoosh of my cold cap filling with the magic cold that I wear to save as much hair as possible. Occasionally, I’ll hear doors of other treatment bays slide open and parts of conversations between nurses and patients. So much for privacy. About the only productive contribution I make is pressing the call button. I do that often to alert the nurses when I need to start the next phase of the scalp cooling process or there is an air bubble in the infusion tubing and the machine is beeping rhythmically because it isn’t happy. I don’t do very much. I show up and I endure, no small feats, but I don’t turn cartwheels while I’m there.

Professional patients still want to feel productive. We are quiet; we are vocal. We float in and out of appointments and visits; we dig in our heels and don’t make things easy for anyone while trying to get what we need that makes us feel human and a wee bit healthier. We say we are fine; we tell it like it is. We are grateful; we resent some things. We are individuals; we are part of a cancer community. We keep using our voices to push for action and not awareness; we know the number of women and men who die every day from metastatic breast cancer hasn’t budged one bit. Are we productive? Yes and no. There are no distinctive sounds that make any of these behaviors and feelings stand out.

I exercise. That’s an area of my life where I take ownership. Even this has changed no thanks to the issues I’ve encountered on this treatment with hand and feet issues. I’m aware I keep coming back to this in quite a few of my posts or comments, but I tell you, it has hit me hard. I hurt to some degree pretty much all the time with this treatment. Gripping tools makes my hands hurt. Gardening and yard work took a hit this summer. My first attempt at raking this season didn’t bode well for all I have to rake. My opposable thumbs have been highly oppositional. My poor elbows are skinned due to using them to push up off the floor when doing yoga or getting out of bed because pushing off my hands is painful. I work hard at walking, but I never know where my edge is and when I will have done too much. I only had blisters on my feet once, until last week when one the size of dime developed on the top of my big toe. My point is that a lot of the physical work that made me feel like I was being productive has been sidelined. I can’t run right now. I can’t lift my kettlebells. Walking is at a slower pace.

But . . . I have found a way to exercise differently. My coach has been phenomenal. I ordered a weighted vest and can load it up to sixty pounds if I want. Twenty pounds is a good amount for me. I can wear it walking around the house. An extra twenty pounds makes a noticeable difference. I will load more when twenty pounds doesn’t make me work hard. I climb stairs wearing it. I do squats, forearm planks, modified pushups, and some yoga poses. Over and over again. My core gets a workout. That vest pushes me. It makes me sweat. I feel alive and decisive.

The vest gives me control and agency. Putting it on and doing hard work is my choice. I know there will be moments I wish I wasn’t wearing it because it makes the work I’m doing lots tougher. It makes me feel like I’ve accomplished something and like I’m winning for a few minutes of my day. The vest makes me feel strong and proud of myself. I know I’ve had a good workout after I’ve used it. Feeling strong and proud are powerful feelings. I can do hard things. Hard things that make me feel good. Hard things that I choose. I am productive.

How do I know?

It’s the heavy breathing.

Heavy breathing is my sound that makes me feel productive.

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.

During, Now, and Next

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

I prefer during, now, and next.

A Brief Look at Before Cancer

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

I felt as others did.

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

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

I liked October.

Thoughts About After Cancer

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

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

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

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

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

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

Long Ago

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

Even photos from childhood cause some sadness.

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

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

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

I can’t remember.

The world of before is out of reach.

During, Now, and Next

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

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

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

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

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

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

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

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

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

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

Fulvestrant and Frustration

Fulvestrant (also known as Faslodex) is a treatment for estrogen positive metastatic breast cancer. It is usually given in conjunction with another drug used to treat MBC. It is received monthly through two injections into the muscle of each hip.

One notorious side effect is muscle soreness at the injection site that can last for several days. I worried about this one a lot. What I had read online painted a painful picture. The first injection cycle was a piece of cake. I wondered what all the fuss was about. I was thankful to have dodged pain.

I found out what all the fuss was about the following month when I had the next set of injections. I was still new to receiving these shots and was waffling back and forth between a clinic and hospital setting. This set was given at the hospital. I didn’t take the weight off the side getting injected. No one reminded me. I was in pain immediately. Pain radiated from my hips all the way down my legs. I spoke up but don’t remember getting much of a response. I felt sore afterward for up to a week. I was sent on my way with no reminders for aftercare.

There was plenty of anxiety around the injections that followed. When my original oncologist left the clinic and I completely switched all of my care to the hospital, I had an excellent nurse who was an expert on administering fulvestrant. Unfortunately, she has since moved on. I remember I learned a lot when she trained someone one day I received my shots. These are the tips I learned:

Tip #1 Take all the weight off the leg on the side receiving the injection. I knew this from previous instructions.

Tip #2 Stay active. Try to keep moving on the day they are given. Walk before or after. I had already been told that walking seemed to help.

Tip #3 Massage the area after injecting for a minute. It helps move the drug. It makes the injection site less sore.

Tip #4 There were also stretches very similar to a pigeon pose in yoga to help open up the hip area. Again the goal was to prevent soreness the next day. I do these every time.

I must be forgetting some, which sure would explain why side effects have flared up. Please add any additional tips by responding at the end of the post.

The last time I received my injections, a different nurse was training another nurse.

No mention of the massage.

No mention of the stretches.

I had to take over with those instructions. It frustrated me that I had to do some of the teaching. I apologize I don’t remember the nurse who was leading the training. I had not seen her before and she was in and out in a flash. She didn’t know me. However, I felt a sense of responsibility to share tips on what was useful for the patient, the one receiving the injections, because the patient carries home with them whatever side effects result from the treatment that show up that evening or the next day and stick around a day or so. It seemed like that was news to them. I hope they carry what I shared forward to other patients like me. We are more than a stunning pair of hip muscle areas.

I know my outlook is somewhat affected by what I’m calling pandemic brain. This may be a separate post. Pandemic brain is kind of like chemo brain in that thinking is affected by what is happening. Living a quarantined life is getting to me. It’s been ten weeks  . . . and three days.  I’m touchy and easily irritated by fools who are living in a world where they are the only one who matters. Nurses are taking huge risks daily as they are in close contact with those in their care. I am not directing my displeasure at them. Like I said, I’m frustrated, and some of that frustration flows over when I feel like I have to do something I ought not have to do. In this case, that means offering what I feel is information that should be standard care when training someone how to administer fulvestrant. I got the feeling my guidance was received as annoying interference.

Too bad.

I will continue to be assertive (not annoying) where my body is concerned.

It’s true that nurses must train one another about how to administer the injections correctly. I don’t have a problem with that practice. I feel their primary focus is to make sure proper procedure is followed.  Minimizing patient discomfort at the time of the shots seems to be second. This is a part of following proper procedure in my mind. The two are very much connected. A far distant third seemed to be how I felt the next day or days after. It had an “out of sight – out of mind” vibe. All three matter like the sides of an equilateral triangle. Focus fully on training the nurse and administering the injection. Next, focus completely on the patient while receiving treatment. Finally, put all of the attention on aftercare so the patient continues to feel comfortable at home.

The last few times there has been more inflammation and soreness at the injection site. I am tired of my thighs and hips being inflamed and sore. I think a different area of my hip needs to be abused. I’m sorry, I meant used.

Side effects have lately made me feel medically battered. There is always something to manage. It has become routine and most of the time not a huge deal. I wait for times when I can experience my treatments and medications with zero negative effects. I feel like I’m asking for too much.

Am I?

Still in Treatment Bells

Yes, the title is correct. I have read a number of End of Treatment Bell posts over the years. This one has a twist.

Today’s post may be unpopular and upset women and men dealing with metastatic cancer. I am sorry if my words cause distress. There is enough of that in your life and mine. I welcome respectful comments and will respond respectfully in turn.

For those readers who aren’t familiar with an end of treatment bell, it is a bell rung by patients at the end of a final treatment to celebrate the occasion.

If you are a new reader, it’s important to know I’ve had metastatic breast cancer from the start of treatment back in 2012.

Prepare for Controversial View #1.

There was a time when I actively advocated for bringing one of these bells to my treatment center. I supported it for others even though I had metastatic cancer. Even if I would never ring it, I wanted others to have the opportunity. I truly didn’t think hearing it would bother me. I thought I would equate the sound as hope for someone’s future. My intentions were good. I didn’t understand the arguments I read from others because my perspective was different. My plan was to set benchmarks in time and ring it purposefully at those points in time.

I didn’t understand.

I have read. I have reflected. I have changed my opinion. I am deeply sorry I haven’t understood and that it’s taken me longer to get where so many are in their beliefs. I was wrong. I am grateful that the idea for a bell was rejected.

I was told no for the exact reasons so many others have mentioned: Some patients would never get to ring it. It would not be sensitive to their needs.

I have read other reasons on social media from those who do have to hear the clanging of end of treatment bells where they receive treatments and these brief accounts have been gut-wrenching to read. There is trauma in the sound that is beyond painful and harsh. One description compared it to being kicked in the teeth. My perspective has changed. Hearing these bells now would make me feel discouraged, depressed, and envious. One person’s celebration would be my despair. I would not feel good about these feelings or thoughts.

I believe the initial intentions of these bells were good, but also that the decisions were not well thought through and inclusive of all patients. The repercussions have not been positive for everyone. I haven’t read anything about end of treatment bells being removed from treatment areas that have them.

Prepare for Controversial View #2.

Ring the bell.

Ring the bell every chance you get. Ring it when you arrive at your office visit appointment, after your office visit, when you enter the treatment area, and when you finish treatment.  Ring it SEVERAL TIMES DURING ONE VISIT. Ring it because it wasn’t intended for us. Ring it because we weren’t valued in the decision.

My point is if they can’t see us (those with metastatic cancer often are the unseen patients in news or fundraiser campaigns), then we are going to be heard every opportunity we have.

Change the meaning of the bell. It would either become meaningless because we are removing its purpose . . . or something else could happen. Is it completely crazy to think over time a shift could occur where the only people ringing the bell would be stage IV metastatic patients? Could ringing it become a reminder that 30% of patients will become metastatic if more research isn’t dedicated to more effective treatments, medications, and a cure for us? Could it be recognition that 10% are already metastatic at the time of diagnosis?

There are die-ins. Protests. There are many forms of advocating for change. A Still in Treatment Bell could be one more way to use our voice.

Does changing the word end to still make you feel differently or pretty much the same?

Ringing the bell would likely not be welcomed. Good. Let more research happen and then maybe no one has to hear it ring. I really don’t want to ring it but I will ring it with a vengeance if one ever appears where I receive treatment.

I imagine I’d shout, “MORE FOR STAGE IV” as I ring the bell. No rhyming poem. No plaque. No explanation. Just a clear and emphatic shout for what is desperately needed.

I imagine I might be told:

“Please don’t ring the bell. It’s for end of treatment survivors.”

“That bell is not for you.”

“The other patients feel uncomfortable with the constant ringing.”

“You are ruining it for other patients.”

 

How I’d hope to respectfully respond:

“Wouldn’t it be something if no one had to ring the bell? More research is needed for all of us. MORE FOR STAGE IV.”

 

Cancer has changed me. There are times I feel like I’m going nuts. Maybe I need to embrace it and live more of the way I feel.

What does that mean?

It means I should bring my own damn bell to ring at treatments. Maybe I will.

 

Consider responding:

  • How have conversations you’ve had been received in places where bells are present?
  • What are your thoughts on still in treatment cymbals?

Nifty Fifty

Today marks my 100TH post! Numbers are significant in my life. There are lab numbers. Survivorversaries. Birthdays. I remember dates for all sorts of events in my life.

Two numbers of significance in my life are 50 and 50,000.

I will celebrate my 50th birthday in 2020.

Yes, there will be a party.

I am raising $50,000 for metastatic breast cancer research at UW Carbone to celebrate such an important milestone in my life.

Today, I take the opportunity for some self-promotion devoted to achieving my goal. I would call it selfish self-promotion, but that’s only partly true. It’s true I’d love to benefit. The funds raised will all go to research and that hopefully means many will benefit. Most of today’s blog highlights information on my fundraising page. If you haven’t seen it, today’s the day.

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My goal: Raise $50,000 For

Stage IV Breast Cancer Research

To Celebrate My 50th Birthday

 

My Diagnosis

I have been living with cancer ever since my diagnosis on March 14, 2012. Tests, scans, and biopsies were thrown at me one after the other in quick succession to determine what stage was to be attached to my diagnosis. On April 13, 2012, the day I started chemotherapy, I learned I was stage IV.

Facts and Research

Stage IV cancer means cancer has spread, or metastasized, to an area other than the primary site where it originated. Breast cancer that is contained to the breast and is stopped there doesn’t kill people.

Metastatic cancer kills people.

The facts are:

  • 10% of patients already are stage IV upon diagnosis like I was.
  • 30% of earlier stage breast cancer patients will become metastatic.
  • There is no way of knowing whether a patient’s cancer will metastasize.
  • The bulk of breast cancer donations go toward prevention and early-stage research. The percentage of donations going toward MBC research is typically in the single digits . . . unless you know precisely where the money is directed and for what purposes. That leaves too many breast cancer patients feeling isolated, forgotten, or that our lives aren’t worth as much as early-stage lives.

Putting more funds toward research, more treatments, and more options for stage IV lifers benefits ALL breast cancer patients. 100% of donations to Nifty 50 directly benefit metastatic breast cancer research at UW Carbone.

The UW Carbone Cancer Center

Thank goodness for the UW Carbone Cancer Center. The UW Carbone Cancer Center where I receive all my care is one of the top cancer centers in the country and the only comprehensive cancer center in Wisconsin. I know I will always receive quality care and the best treatments available.

Initially, I received 12 cycles of chemotherapy for six months. I took several different anti-cancer and oral chemo pills for several years afterward. For the past three and a half years (and counting) I’ve gone back to more formal chemotherapy treatments and infusions. There have been over one hundred of these. I will have more. I need more.

My Mission

Part of my purpose is to change perceptions on stage IV cancer. People are living longer and stronger with this awful disease thanks to continued advances in cancer research . . . research that must continue.

I have created a space for myself where I focus on living in unrelenting wellness. I do my best to disregard medical timelines and ignore medical statistics. I strive to think outside the medical box and I’ve developed a mindset dedicated toward surviving, thriving, and living well with cancer. I live and lead by example. I work hard to be active whether it’s summer or winter, rain or shine.

My mom passed away from metastatic breast cancer in 2013. She would be very pleased with how well I’m doing today.

I know I will always be in treatment.

When one treatment fails me, I need to move on to another one with the hope it will be more effective and effective for longer.

Research equals hope. Research, however, is extremely expensive.

I am hopeful cancer researchers are on the cusp of making the next great breakthrough in treating, and eventually curing, breast cancer.

I am always hopeful.

Go to my Nifty 50 page to make a secure donation.

DONATE HERE

Thanks so much for your support.

Patients Have Names

I transferred from a smaller cancer clinic setting to a cancer center in a major hospital late last summer. I still believe I am getting excellent medical care.

There are some differences, differences I don’t like. They stem from the sheer newness of my experiences and the size of the cancer center. In time, the newness hopefully will feel more familiar. The gargantuan feel of the hospital maybe will feel smaller as I’ll only go where I need to be.

I’m not so sure about the size. There are two waiting rooms for labs. I’m given a pager that lights up and vibrates when it’s my turn like the ones used in restaurants when your table is ready. Sure, it’s a way to keep things moving quickly and it provides some privacy, but I have a perfectly usable first name. Then I go to another level for the breast center clinic where I wait in another waiting room. After the office visit, I trek upstairs again and get comfortable in a third waiting room where I wait for treatment. I check in at some type of reception area each time. So far, I have had moderate to long waits in each of my waiting rooms with no updates as to how much longer I’ll be waiting. I took my time between waiting rooms two and three last time and went to the germateria for lunch. I still had a good wait when I made it to the last waiting room.

I feel confident about the growing doctor-patient relationship I am developing with my new oncologist. It’s different from the one I had with my former oncologist, but it should be as she is a unique person. Oncologists are not one size fits all just as patients are not.

The treatment area is where I’m identifying more of a repetitive insensitivity issue.

It’s less personal. An identification bracelet is strapped on and it’s scanned to populate my personal information. It beeps. Every time. I hate that bracelet. It’s one of many factors that make me feel like I’m an illness. I will move past it.

I have a name and I’d like for my nurses to use it.

On my first visit there, the nurses noted it was my first treatment so I needed to be watched for a possible allergic reaction. No, it was only my first treatment at that facility. It was my 10th with this protocol and my 109th overall. For whatever reason, this important data wasn’t coming up. It’s a distinction I happen to think is worth knowing and should be correctly documented. Could just be me. Talking to me, bringing the patient’s voice into the discussion provides meaningful, not to mention accurate, information.

I know I have to give up comparing how my new place is different from my old place, but I never had to wear an ID bracelet in the old place. Everyone knew me. They took a genuine interest in me. We knew things about one another’s lives on personal levels. If an appointment needed to be changed, I was called. Here, I get a letter informing me appointments have already been changed without consulting me if the changes work for me.

Patients also have telephones by the way. It’s a good thing I’m not working and have a little more flexibility.

There’s more. Most of the nurses just swing in and out of my treatment cubicle and it’s all business. Some tell me who they are; some do not. Some are friendly; others not so much. I usually have more than just one per visit because they are running around caring for multiple patients at a time. I’ve asked for their names. My bracelet gets scanned and apparently that’s sufficient.

I have a name.

I am more than my ID bracelet. I am not a number. I am not an illness, and I am so much more than a patient. When multiple nurses shuffle in and out, it makes me feel like I’m not assigned to any nurse specifically. I feel like I’m an inanimate object on an assembly line. Truthfully, I feel a little bit that way when I have to visit three different areas on one visit. I feel that way when I’m not consulted about appointment changes. Asking if bigger is better in terms of patient care is a whole other topic.

I have had a couple of very friendly nurses. They visit with me and I do feel like I’m starting to get to know them and build connections. Personal connections and positive relationships make my health care better. I know their names. I recognize them. It helps me feel like I belong. Patients have names and it’s not unreasonable for nurses to use them. I empathize that they are spread thin and have a lot on their plate. I get that a lot is asked of them. I know from visits with my nurse friends at my old place how they are often left out of the loop with decisions that affect them. I know that more and more is being asked of them and that they have to do more with less. I know that some of these decisions don’t put the interests of the patients first. I know they referred to me as family. I felt the same and I miss them. I know all their names (Karen, Sue, the two Brookes, Kari, the two Ambers, Amanda, Sandy, Kay, Kelly, Justin, Nina, and Beth).

Is knowing a patient’s name too much to ask? I don’t think so.

As a teacher, calling a student by their name lets the student know you recognize them, that you care about them and their success, and it fosters a sense of trust. Students feel comfortable and, oh, I don’t know, it has a positive impact on learning. If I were a parent, I would not want my child to have a teacher who didn’t know their name. I would like my nurses to know who I am. I believe being recognized, feeling cared for, and trusting your healthcare providers will have a positive impact on care given and care received.

Going forward, I will be proactive and introduce myself, letting my nurses know that using my name makes me feel valued. I won’t be able to change the three different areas I visit when I’m there. I won’t be able to change how long I wait. I won’t be able to ditch the ID bracelet. I may not even be able to do much about whether nurses take my encouragement to use my name. All I can do is try.

Update: Most of this post was drafted about one month ago. My past two visits have been more positive in terms of my interactions with my treatment nurses. Situations change. I hope mine has changed for the better. I could have chosen not to publish this post, but I went ahead with it because it’s important to remember patients aren’t numbers, or statistics, or are treated like part of the equipment we are hooked up to when receiving treatment. We are people. We have feelings. We have names.