Cancer: Port Problems and Infections

As I’ve often said, there is always something when living with metastatic cancer. This post is about two of those somethings.

The National Cancer Institute defines a port-a-cath as follows:

A device used to draw blood and give treatments, including intravenous fluids, blood transfusions, or drugs such as chemotherapy and antibiotics. The port is placed under the skin, usually in the right side of the chest. It is attached to a catheter (a thin, flexible tube) that is guided (threaded) into a large vein above the right side of the heart called the superior vena cava. A needle is inserted through the skin into the port to draw blood or give fluids and other treatments. A port-a-cath may stay in place for many weeks, months, or years.

Most refer to this as a port for short. I had my port for almost 9 years.

My port had always been comfortable. It was flush in my chest and didn’t stick out like a raised bump that I’ve seen in many photos. It was noticeable but not eye-catching or prominent. It was just there. Lately, I noticed mine felt tender and sore. The soreness stretched all the way up to my neck. I would feel sore for days after a treatment. It pulled and tugged at the port site and along the scar on my neck when I was both active and inactive. I chalked it all up to my port being used weekly. I’m receiving Taxol as my chemotherapy and thought it was more or less kicking my butt. I would recover and feel normal before the next treatment and the cycle would start over again.

One day I noticed the incision scar at the port site looked a little pinker. Again, it’s been used a lot more lately. It didn’t give a blood return regularly, which was accompanied with pushing, prodding, and all kinds of maneuvering to get it to work. The pinkish color was expected in my opinion. Still, I put my port at the top of my list to discuss with my oncologist. I wondered if it had moved a bit, had leaked, or was just plain worn out.

When I go to the cancer center, my schedule has a consistent order: labs, office visit with my oncologist, then treatment. The port is accessed for labs and then covered up until treatment is given. My oncologist never sees it. Due to some strange twist in scheduling, I was to see my oncologist two days before my labs and treatment. The port wouldn’t be covered. If not for this odd anomaly in scheduling, I’m not sure my issues would have been discovered. A higher power was intervening.

My oncologist agreed my scar looked pink and not quite right. She ordered my CBC panel early from the lab and also included blood cultures to check for infection. She also wanted me to check in with my surgeon to do a port check which would make sure the port still operated efficiently. She was doubtful that anything would turn up in the blood cultures or in the port check. All was precautionary.

My CBC blood panel was all fine. Even those absolute neutrophils were behaving, although they were a bit lower than I would have expected for Day 1 of a new infusion cycle.

The blood cultures were new for me. These are tests to check for infections in the blood (bacteria, yeast, fungi, other microorganisms). Knowing the kind of infection helps determine what the best antibiotic is to treat it. Blood is taken centrally from the port to see if only the port is infected. More blood is taken peripherally from the arm to test if an infection has gotten into the bloodstream. It takes 24-48 hours for an infection to grow and the test to come back positive.

My day suddenly became a lot longer. I headed from the cancer center to a building about ten minutes away to see the surgeon who had installed my port. He wanted to take it out immediately because it was so old. The discussion became one of multiple scenarios. I wouldn’t really need a port check done if he was removing the port the next day. There wasn’t much point if it was coming out regardless. On the other hand, we should wait for the blood cultures to come back before removing it. He was fairly confident they’d be negative, but to be safe we should wait. If he installed a new port to an infected area, the new port would need to be removed and we’d be starting from scratch. Then again, there also was no hurry. My port could come out at the next convenient gap in treatment. Now was an ideal time to remove the old and place a new port since my counts were all good. It went back and forth. I decided to be thorough, have the port check, and wait for the results to come in from the blood cultures. I’m glad I did.

The next morning, I headed out for my port check. The port check showed a leak in the catheter up near the neck. Little spurts of contrast dye leaked out and swirled like tiny puffs of smoke. This port was done. It could no longer be used in any circumstance for blood draws, injections, or treatments. I was to let no one near it. No one could touch it. I got the message. I’d wrestle anyone who tried to get at it, and I would win.

A leaking port explained a lot. I had experienced strange symptoms ever since I started a new treatment. An allergic reaction was first thought to be the issue. Then the position of the chin strap on the cold cap was thought to be the problem. You can read a past post about those experiences HERE. The swelling continued without knowing what caused it. No one but me seemed to notice. I finally connected that it was swelling in the areas where the port was located in my chest and neck. At last, my discomfort and pain made sense.

I returned home to begin a lot of rescheduling. It looked like I could get a new one placed the following morning. I would need to reschedule my chemo to the afternoon but that was possible. I had everything set up. I was ready to head out for my required COVID test.

Then came the calls that the blood cultures were positive. First one was positive. The port would not be replaced the next day. I didn’t know how chemo would be affected. Then came the call from my oncologist that both cultures had turned positive. No chemo. White blood counts would drop more. The infection had to be cleared before chemo could be resumed.

She wanted me to have IV antibiotics.

I was to stay overnight in the hospital for two nights. My port would be removed while I was there. To be clear, the leaking port and blood infection were two separate issues that just manifested at the same time.

Rats, shoot, darn, and fart up a tree. I hadn’t expected this, but it had to be done, and I could accept how events were playing out. Get it done quickly and get me back on track. Looking back, I am grateful for the quirk in scheduling that allowed this infection to be caught in very early stages before I showed any symptoms like fever, sweats, and chills.

I arrived at the hospital and settled in for my two-night getaway. I started receiving an antibiotic called vancomycin in my IV immediately. Later daptomycin and dalbavancin were added. Little did I know my adventure was just beginning.

Stay tuned for a special post tomorrow to read about relatively simple surgeries that aren’t that simple and other tests.

Falling Sky

When the sky falls

It falls directly above me

Chunks of space left above me

An empty howling nothing that shouldn’t be there

An empty howling nothing

Pulling and waiting

Fissures fracture across the blue like fault lines on the ground

Foreshadowing where the next piece may fall

Sky falls when you hear the words

You have cancer

Lots of sky falls

Scans confirm it’s already metastatic

Another piece plummets

So much information

Type, subtype, hormone receptor, Her2Neu

Each a piece of forever lost sky

Cancer words hurl pieces of sky

To the ground in a show of gravity and force

Grades, mutations, invasive, lobular, ductal

More pieces

Stages

Chemotherapy

Lymph nodes

Trials

Genetics

Genomics

Treatments

Survival benefit

Bigger pieces fall

You barely notice because

Of the doom that distracts while closing in

Like a dark night of your soul

Metastatic

This piece hits like bricks

You’re never the same

Everything changes

Forever scarred

Inside and out

So many deaths

Each their own portion of fallen sky

Grandma, Mom, Pete, Jim, Becky, Susie,

Bobby, Karen, Marge, Kim, Lalay, Lindsay,

Meghan, Melissa, Heather, and so many others

Whose names do you remember?

Speak and give them voice

Irreplaceable sky fallen with each

Loss through death touches our souls forever

Like a shadow that never leaves

Or a coldness in the yellow warmth of sun

So many scans

Tiny tubes of skyless holes

Confining, enclosing, lifeless

Sky falls waiting for results

Slingshots take aim at clouds

We ourselves knock out chunks before we hear

News of regression, stability, or progression

Pieces of blue get patched and repaired with good news

And then fall again in bigger chunks with bad news

until they can’t be put back

Some things can’t be put back

Including the fallen sky

That won’t see sunrise or sunset again

Skies fall in countless ways

Some spoken and some silent

Skies drop cruelly with metastatic cancer

Piece by piece

Chunk by chunk

Section by section

Assaulting, assailing, and attacking

Erasing, eroding, and emptying more and more

Stealing, silencing, and stilling before our eyes

A persisting and prevailing powerlessness causing pain

For more than just the haver

Cancer kills

Murders

Slays

Massacres

Cancer carnage concealed in common language

Of either succumbing or statistics

What’s being done?

Where’s the urgency?

Why can’t it be solved?

When will all be saved?

How will we get there?

What’s being done is our voices

Speaking and shouting

More and more

We will be seen

And not silenced

More research slowly unfolds

More action and faces

More is needed

The urgency is the estimated 43,600 breast cancer deaths

For 2021 in the US

119 a day

Up 3 from last year

The answer is more resources and research

More advocacy, attention, and connections

Better treatments, more trials, more collaboration

Growing bigger one life at a time

I don’t know when all will be saved

I hope, I cry, I push, I pray

I keep going

I still don’t know

No one does

I don’t know how

But believe one day

Cancer will fall and be no more

Just like those pieces of falling sky

The sky has always been one of my favorite things

The endless blues

The different hues

The starry nights

The paint of sunrises and sunsets

The clouds floating freely wherever the wind takes them.

Still moments and morphing shapes change before our eyes

My home is still under its dome

Hope is in the sky

Let’s keep our eyes steady on the hope

Of today and all our tomorrows

And not those pieces of sky that fall

They will sadly keep falling

And I will look up to find

Handfuls of hope

Patches of blue

Where I can

Above

Why Winter Is Beautiful

Winter is beautiful with lots of snow to paint the surroundings in postcard scenes. Enthusiasts hit the outdoors with passion. Others enjoy the scenic views from inside. It’s how it should be in Wisconsin. Snowbirds fly south. Of course, many live in warmer climates all year by choice. Winter takes on a greener and warmer meaning in those places.

Memories of snow days as a child were rare miracles. A free day playing at home. The appreciation of a snow day was not lost on me as a teacher. They always came along at the right time. Virtual learning throughout the pandemic has made the snow day obsolete. As a retired educator, every day is extended summer for me or a snow day depending on the time of year.

I love Thich Nhat Hanh’s wisdom for many reasons. His thoughts on snow fit perfectly with a Wisconsin winter. I’ve come back to one of his quotes several times this winter.

If you choose not to find joy in the snow, you will have less joy in your life but still the same amount of snow.

Thich Nhat Hanh

I hope to provide some pictorial joy of the snow for you today.

A fresh snowfall looks so pristine. Diamond glints catch in the sunshine and the snow sparkles invitingly. You don’t want anything to disrupt these views. All is still and quiet everywhere you look. It always feels a little magical when I get to be one of the first to experience a landscape after a snowfall.

Cross country skiing and walking is my favorite way to enjoy winter scenery. Walking provides more flexibility and exploration. There is beauty around every bend. I also don’t worry about my balance or falling when walking. Walking means I can do hills! I have become a year round outdoor walker.

The historic Hyde’s Mill was a new discovery for me this winter. It’s a stone dam with a wooden water wheel dating back to 1850. It felt frozen in time and yet the gurgling sound of water rushing helped me appreciate the present moment. This was earlier in winter. I haven’t been back but I’m confident the water has frozen solid by now. I look forward to making trips in other seasons for comparisons and to travel back in time once more.

Contrasting views during and after a big snowfall have been fun to see this winter. Both have their own beauty. It was enjoyable to watch the snow coming down from the warmth of my home. The next morning was stunning where the sun slowly melted the snow off of tree branches.

Cardinal company is a treat all year. The red stands out on a white background.

There is so much to take in on winter walks, more than just snow. These views hold memories for me and tell stories. While passing the bench, I wondered when I last held snow in my bare hands. I couldn’t remember, so off came my gloves and I scooped up a handful. It was cold and packable, really good snow. It felt refreshing and took me back to childhood very briefly.

The last time I went sledding was a few decades ago. The pandemic has brought adults out in droves over winter to partake again in this childhood activity. Everyone seems a little more stir crazy than usual this year. Sledding is such a fun way to experience the thrill of the hill and flight on snow. There is laughter and screaming. It’s a momentary escape and opportunity to release and let go of unhelpful feelings. While sledding, I felt like a kid again who could do anything. I felt fully alive. I even made a snow angel that only partly turned out. New traditions can start at any age. We are only as old as we feel.

This was a truly beautiful day and now a treasured memory.

I hope if you have snow where you are, you have found a way to enjoy it.

Yoga Pants and Fleece

Clothing seems to be on my mind a lot lately. It stems from a need to self-soothe. Seeking out sources of comfort and touch during a pandemic has been challenging on my own. I want to immerse myself in a cloud of soft comfort. Maybe I want to feel like I’m a newborn, wrapped in a blanket and safely cradled in my mother’s arms. Neither of these is possible.

I have yoga pants and fleece.

How did I get here?

My attire was somewhat preppy in high school. There were an alarming number of shoes to go with outfits. I didn’t feel I was high maintenance, but I may have projected something different. I was not as dressed up in college because of all the walking from class to class. I still think I was overly preppy. It also looks like I mixed it up with some lowkey material girl looks from looking at old photographs, yet these were in a very conservative way.

My teaching wardrobe went through several cycles. I felt I needed to wear dresses and skirts when first starting out to establish myself as a professional. The longer I taught, the more relaxed my wardrobe became. I knew I could look professional and respected without dressing up. Times changed. Black, navy, gray, and tan slacks became staples. Jeans were acceptable to wear. School spirit gear was fun. I know I showed up in my “dressy” yoga pants with sweaters a few times in my last few months in the classroom.

Early retirement brought on a much more comfortable wardrobe. I expanded my yoga pants collection to include black, navy, and gray colors. Yoga pants were soft, flowy, forgiving, and could be worn just about anywhere. It’s always exciting when the heat of summer draws to a close and temperatures drop enough for yoga pant season to begin. I may be oversharing and have a problem. Oddly enough, I don’t do very much yoga. They are my standard anything oncology wear from treatments to scans. The lack of metal is a big draw on scan days.

I also have an addiction to fleece zipped jackets. I don’t like tight cuffs around my wrists nor am I a fan of pullovers or hoodies. When I find a style that suits my requirements, I order several in favorite colors. Colors that offer many options with my yoga pants.

My yoga pants and fleece give me softness and moments of comfort. I can feel safe for a bit. The texture is calming. They even make great pajamas even though pajamas are another one of my favorite things.

Cancer is hard. There are days it is almost too hard. It is an effort to function throughout the day. Those days are void of joy. I’m happy (relieved) when I crawl into bed at night. I don’t feel like I can put it into words. Any long term, debilitating, life stealing disease is hard. On days when I’m wiped out with fatigue from treatment or simply emotionally done, I feel better wearing my soft clothing.

Cancer is uncomfortable. I have been nauseous. I have shivered and roasted in the same moment. I have been exhausted. I have had steroid induced insomnia. I have had worry and fear induced insomnia. I have had severe muscle spasms. My hands and feet have provided unrelenting hurt. I have been emotionally assaulted regularly by a number of triggers. I have been irritated, annoyed, angry, pissed off, and deeply sad. I have spent full days at the treatment center for lab, oncology visits, and then treatment. I have been sent home early with no treatment due to poor labs. Those days are not easy.

Cancer is not safe. Everything is not okay from Day 1. Mathematically, this is around Day 3,243. Metastatic cancer is like swimming with sharks with a bleeding cut or trying to escape an avalanche and never really having a chance. I willingly submit to receiving deadly poison throughout my entire body to chase after something even more deadly. Some take radiation treatments. Some have surgery. Medication is taken multiple times a day. All of these come with a long list of possible side effects – including death. I’m doing the best I can.

Cancer’s texture is rough, harsh, indescribable. It’s a far cry from yoga pants and fleece. It’s more like wearing a coat of searing burning nails. Keep in mind not all days feel this way. One is one too many. There are days where I wear more normal clothes and I feel almost dressed up, because frankly everything is a step up from yoga pants. Dressing up has its merits in the name of feeling normal and functional. I dressed up for my last couple of treatments and received my share of compliments, the best being I looked much younger than my age. Admittedly, that lifted my spirits. Comfort is the key word most days.

Yoga and fleece can only take me so far. Soft clothing helps. I feel a bit like Linus must with his blue security blanket. Security would feel comforting and steady. Thank goodness for small pleasures like yoga pants and fleece. They will have to do.

What do you do to self-soothe?

Cancer and Unsuitable Clothing

Winter brings many changes to how lives in winter climates are lived. Some hibernate like bears. Others embrace the outdoors, don’t mind the cold temperatures, and admire winter landscapes. Wherever you land on the spectrum of winter enjoyment, suitable winter attire is a necessity for enjoying and surviving winter if you spend any time outdoors. Alfred Wainwright, a British guidebook author, wrote the following in one of his books:

“There’s no such thing as bad weather, only unsuitable clothing.”

Alfred Wainwright, Coast to Coast

I purchased a new winter coat this year for winter. My new coat is supposed to keep me warm even if temperatures drop to 30 degrees below zero. I promise you I won’t be outdoors in such weather. I also have new snow pants that I can wear under my new coat. I have a new hat. My mittens and scarf are new from last year. All ventures in these so far have proven I stay toasty warm and dry.

My clothing is more than suitable.

I am ready for outdoor winter activity. I am ready to socialize while socially distancing. I want to see my friends. I don’t want to turn into a human icicle while seeing them. Just in case I feel my clothing is unsuitable, I’ll have a thermos of hot tea with me. Moving will be incorporated when possible. Come snow, cold, and biting wind, the pandemic will not diminish friendships any more than it has already. If nothing else, I’ll be out of the house trying to appreciate what a Wisconsin winter has to offer. I’m one of those people who thinks winter is beautiful (to a point).

If only I could be equally outfitted and prepared for cancer crap. I’m not talking about special bras, head gear, clothes for scans or accessing ports, or even the cute pink t-shirts some people just have to have. A lot comes into play to be even minimally outfitted for cancer. I am good at anticipating my needs. When I head to the cancer center, I do not travel light. I pack food and plenty to drink. I dress for comfort and easy access to my port. I bring enough to keep me busy while I’m there. I have my binder ready with my questions for my oncologist. My cold capping equipment is another necessity now always with me. I’m sure I look like I’m staying a few days rather than several hours.

Living with metastatic breast cancer means I must be mentally ready for what cancer throws at me. Metaphorically speaking, I need suitable clothing. I wear layers. There is a security wall I can activate in a flash when needed to protect myself from unwanted comments that pry, pressure, or are pitiful. Often, I surround myself with this wall at office visits for other reasons. There is a sterile and impersonal energy there I’m convinced must be pumped through the ventilation system. I do better emotionally if I can be somewhat detached and not feel so I can ask questions objectively and keep my focus. It’s hard because I make decisions and feel things out with my heart more than my head. Cancer has transformed that ability and I’ve gotten better than I intended at being numb to my feelings.

Another layer is planning for side effects and how they’ll impact my schedule. Grocery shopping, meal planning, meal prep, laundry, paying bills, trips to the pharmacy along with other errands, and all the things grown-ups do get planned around my treatment schedule and side effects. The occasional outdoor social activity is planned when I am most likely able to safely do it.

There are a few positive layers to my cancer clothing. I have my healthcare team. I have strong treatments. I have true friends who are a wall all on their own. Together, they form a mighty fortress to protect and support me as real friends do. I have traits that I like to think of as strengths: hope (belief, faith, spirituality), determination (stubbornness), and my sense of humor (perhaps this really is insanity). I consider myself a lifelong learner and love what I can learn about life and try to help others when I can.

Even with all these layers that may serve me well, I still feel ill-equipped to go up against the cancer beast. My wardrobe is most unsuitable where cancer is concerned. Nothing does what I need it to do – wipe out the cancer. Medical advances are not advanced enough. Everything is designed to lessen the effects, provide relief, keep me strong, while hopefully working against cancer growth. The side effects are still unsuitable. Additional drugs are doled out to address side effects and they have side effects of their own. It can be tough to track what ick is from what drug. The medical approaches are unsuitable. The overall survival rates from research are unsuitable. Research more often than not isn’t applicable to me. Unsuitable. The lack of more effective treatments is unsuitable. There are more and more complications that insert themselves into my life. I regularly have to tweak a hack that worked well for me to something lesser. A lot of the time I feel like cancer has stripped me bare. I’m left exposed, shivering, and defenseless. All unsuitable.

I need a treatment that surrounds me like a down coat and can keep me warm up to 30 below.

We all do.

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.

Cancer Perspectives

Years back, I had a student I will call Paul. Paul greeted me cheerfully every morning and most days made me smile easily. He was a chatterbox, an average student, and enjoyed being at school. He was there for the social aspects and needed redirection to work independently, but he’d always tell me learning was very important. He struck me as a happy child because he could find the bright side in just about anything.

At some point during that school year, Paul lost his enthusiasm. School wasn’t where he wanted to be. He was unusually quiet and wouldn’t open up. There had been a few more behavior issues surfacing. It was a puzzle until the morning I logged on to my school email and found an angry email from his mother letting me know Paul had been hit in the face during class. She included the principal in the email as well, citing concerns her son was being bullied at school both in class and on the playground.

Had Paul been hit in the face in class? Sadly, yes. I was there when it happened and already had it processed and worked through with both boys. Enter a boy I’ll call Ali. Ali had poor impulse control, and like Paul, could be easily distracted. Now, it doesn’t take long for mutual distractors to connect with one another in whatever ways they will. What was interesting in this situation was that Paul had positioned himself right behind Ali during a cooperative class activity. He was holding one of Ali’s arms behind his back and wouldn’t let go. Paul also left that part out of his story when he reported the story to his mother.

So, Ali slugged him.

Paul let go.

Every player had a different perspective of these events. Paul’s mom was seeing a pattern that worried her and she was advocating for her son. She knew if she threw the word bullied into the conversation that it would have considerable traction. It always does whether it is an accurate description of events or not. I wonder what she would have thought if I suggested Paul actually had bullied Ali because of repetitive issues between the boys. I didn’t ask. No need to stir that pot.

The principal had more of a three-tiered perspective: support for the child, positive communication with the parent, and supporting how I responded to what happened in the classroom. He knew of the other incidents that involved playground events and some reoccurring students.

Ali’s perspective was reactive. He often didn’t think before he did something. I imagine he was thinking something along the lines of, “Why is Paul grabbing me? It’s my turn in the game. Let go!” Pow. Problem solved.

Paul had a couple points of view. He knew what would get a response from home, and he genuinely was not feeling accepted by peers. He wanted friendships, but ironically had unsuccessful interactions which achieved the exact opposite of what he intended. He felt picked on. I never really learned what happened on the playground, but I’m sure it factored into his feelings. In his mind, all these things together made him feel bullied.

My teacher perspective was one where I was just baffled by Paul’s motivation to grab Ali’s arm like he did in the first place. I was equally baffled with Ali. Who just hauls off and hits someone? I guess someone who feels like they are being restrained for no reason.

Reality is often intangible. Each of us has our own reality as we perceive it, each through our own lens. The same event affects people differently.

The same is true with cancer. Cancer affects people differently. There is no right. Each person perceives cancer from their own viewpoint. Those who are back to whatever normal is after an early stage cancer diagnosis and treatment see cancer very differently from those with metastatic cancer. Some with metastatic cancer call themselves survivors, thrivers, metsers, cancer havers, lifers, or warriors. It comes down to the individual. Caregivers, family, oncologists, and nurses all offer their own unique perspectives. Media in my opinion gets it wrong more than they get it right because their goals for a story don’t often match mine. Breast Cancer Awareness Month and the repetitive emphasis on pink and awareness rather than research and action is a perfect example.

How others with Stage IV cancer view those of us who have survived longer than the 2-3 year median is another area of differing perspectives. I read something recently where someone felt that those who shared longer survival times were being cruel to those who weren’t likely to experience more years. I’ll hit nine years in a few months. I see those who share longer survival as symbols of hope. I look to those who have 11, 15, and over 20 years living with metastatic disease.

It’s all a crapshoot. It all sucks. I recognize it may be difficult to read news when you may not be doing well. Sometimes it’s rough to read news of stable scans or NEAD when mine are not. It can be hard for me to share news when things are going well because I know others don’t have those results. I usually don’t share much news publicly. And yet, I don’t see sharing such news as being cruel. Good news is always good news.

One viewpoint I have a tough time accepting is the natural or alternative approaches to treating cancer. Modern medicine is always going to be my frontline plan. I do believe in complementary therapies to support my health. There was someone early on in my diagnosis who reminded me more than once that I chose the chemo route to treat cancer. Did she think I didn’t know? What exactly was her point? I was well aware that I chose science over crazy. I may eat my kale and turmeric, but I’m of the opinion I need treatments with more medical substance. I’m here because of them.

There are those with cancer who may want to talk about how things are going and medical results in great detail. Some people are an open book. A patient (total stranger) in the treatment waiting area once told me all about his medical treatment plan and then proceeded to stand up and almost take off his t-shirt to show me his burns from radiation. I hadn’t asked, couldn’t stop him, and got myself an eyeful of awful. He was all about sharing. To each their own.

Over the years of living with metastatic breast cancer, it has been especially challenging not to let negative comments from family members and well-meaning friends fester away and gnaw at me. Some people at times are just awkward with me. How could the same person ask repeatedly if I missed teaching? Maybe it was dementia or just awkwardness on their part. My “prognosis” used to be brought up often by another. A friend or two has become distant. Look, I’m living and out in the world accomplishing things I wouldn’t be if I were working full time. It strikes me as really uncaring that others try to stick me in a place they think I am or remind me of what a textbook has to say about me. Occasionally, someone “reminds” me that I have cancer. I’m not going to forget. It’s with me every day.

The Blind Men and the Elephant is an Indian fable about six blind men who encountered an elephant but did not know what an elephant was. They saw it by feeling it with their hands. Each felt a different part of it. One thought the elephant was like a pillar by feeling its strong leg. Another disagreed and thought the elephant was like a rope because he had touched its tail. The third, who had touched the elephant’s trunk, insisted an elephant was more like a thick branch of a tree. The man who had felt the elephant’s ear thought an elephant was like a big hand fan. The fifth blind man thought an elephant was like a big wall from touching its belly, and the last, who had touched the elephant’s tusk, said an elephant was like a solid pipe. All of the men insisted he was right and they loudly argued.

Along came the king who didn’t like all the noise. He told the blind men they all had different experiences but were all right. After the men understood the true nature of an elephant, the arguments ended, and the elephant transported the men away.

We are so like the blind men when we let only our experiences form our perspectives. And of course, how could it be any other way? What is important to keep in mind with the parable and with life is that people approach situations from different perspectives based on different versions of reality. Cancer is a pretty big whopping elephant and gets perceived in countless ways.

I may not agree with how everyone chooses to share or specific ideas about cancer. I know not everyone agrees with all of my thoughts. That’s okay. I believe we still can support one another and can learn from each other. There is room for all of us at the table to share our experiences.

And I won’t slug anyone if we disagree.

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.

A Review of 2020

2020 won’t fade soon from our memory and never from history. Too many events were put into motion that will continue to play out for years to come. I suppose that’s always what happens. Some events have already had major impacts on our lives, whereas others may scarcely make a dent in the grand scheme of things. Big and small, this is my look back at 2020.

Nationally and Globally

COVID-19.

All anyone could talk about was COVID, COVID, COVID. Sound familiar? To frame it with numbers, almost 330,000 have died from the virus in the United States as of December 26th according to data provided by the CDC. That number is a staggering reminder of what will be carved forever in the rock that is 2020. I know a handful of people who have had the virus and almost all had mild cases. I am fortunate no one I’ve known has died from it.

Everyone knew who Dr. Fauci was and recognized him as the voice of science and reason throughout the pandemic.

Toilet paper and hand sanitizer became hard to find items. Shelves in stores were bare for months.

Too many people watched and got addicted to Tiger King. I did neither.

John Krasinski gave us hope in his segments of Some Good News.

Many passed the time baking sourdough and banana breads. These and other forms of baking provided comfort in a tangible way to our lives.

Earth had a chance to breathe when the world shut down because of COVID. Fewer cars on the road improved air quality. People used their cars less since many were unable to work or they worked at home. We all win with a cleaner planet.

Zoom. A word that can stand on its own.

People staying home more had some negative outcomes. The unemployment rate reached a record high of 14.7% in April. A rate of 6.7% in November has been the lowest since before the shutdown.  As a comparison, the U.S. ended 2019 with a rate of 3.5%. Many businesses permanently shut their doors during the pandemic.

The Summer Olympics set to take place in Tokyo were canceled and moved to 2021.

Black Lives Matter demonstrations took place across the country to protest police brutality and racially motivated violence towards black Americans. The deaths of Ahmaud Arbery, George Floyd, Breonna Taylor, Rayshard Brooks, and Daniel Prude were a few of the deaths that caused unrest nationwide.

A fly landed on Mike Pence’s head during the only vice-presidential debate before the election and stayed there for around 2 minutes. Kamala Harris effectively and firmly told him she was speaking when he repeatedly tried to interrupt. She was speaking.

Mississippi voted to remove the Confederate flag as part of its state flag and replace it with the image of a magnolia blossom.

The U.S. held a presidential election. It affected people nationally and globally just as COVID did. Donald Trump will be leaving office. Joe Biden decisively won the popular vote by over seven million votes (81,283,485 to 74,223,744 votes) and the electoral college (306 to 232) and will be the 46th president. Kamala Harris will be the first woman vice president and the first woman of color to hold that office. The election was held on November 3rd and results were shared on November 7th. It took days to count the massive number of mail-in ballots.

The first healthcare workers in the United States received the COVID vaccine on December 14th.

The world lost many well-known figures in 2020. I apologize if I’ve left someone out you feel needed to be included. It means I am less informed than I would like to be and their name didn’t provide instant recognition. It doesn’t diminish their life contributions. There are always too many who have moved on. The world said goodbye to these well-known individuals:

Don Larsen 1/1

Jim Lehrer 1/23

Kobe Bryant 1/26

John Andretti 1/30

Kirk Douglas 2/5

Orson Bean 2/7

Ja’Net Dubois 2/18

Katherine Johnson 2/24

Roger Mayweather 3/17

Lyle Waggoner 3/17

Kenny Rogers 3/20

John Prine 4/7

Little Richard 5/9

Jerry Stiller 5/11

Fred Willard 5/15

Carl Reiner 6/30

Hugh Downs 7/2

Nick Cordero 7/5

Charlie Daniels 7/6

Kelly Preston 7/13

John Lewis 7/17

Regis Philbin 7/25

Wilford Brimley 8/2

Chadwick Boseman 8/28

Ruth Badger Ginsburg 9/18

Helen Reddy 9/29

Eddie Van Halen 10/6

Sean Connery 10/31

Alex Trebek 11/8

David Lander 12/4

Natalie Desselle Reid 12/7

Chuck Yeager 12/7

Charley Pride 12/12

If you lost a loved one this year, I am so sorry for your loss.

Effects of 2020 on My Life

I momentarily backtrack my comments to 2019. My 2019 was wonderful. I felt fantastic. I accomplished a lot and brought about many good things in my life. I’m always hesitant to start a new year because there are so many unknowns. It was the same way at the beginning of 2019 but I knew what I had by year’s end. I now know what 2020 has held for me.

My only vacation of 2020 turned out to be a quick trip down to Chicago to visit my friend Emily in early February. It was the calm before the storm. We ate in restaurants. We enjoyed the Shedd and walked around wherever we pleased while the penguins were confined. It turned out those penguins got out more than I did this year. We shopped in stores and touched merchandise we didn’t buy. My glasses didn’t fog up because masks weren’t on anyone’s radar. I could hug her family. It was a magical time.

The entire world was given an extra day of 2020 on February 29th with Leap Day. I don’t think it was needed, but we got it. John Mulaney hosted Saturday Night Live that night and delivered a monologue that I’ve listened to an absurd number of times because I’ve needed more laughs this year. It holds up and is still funny each time I hear it. Give it a listen.

March 13, 2020 was the last time I was social before the initial lockdown. My friend Holly and I were planning on going to Wicked on the 15th. It deteriorated and I bowed out because I couldn’t justify putting myself in a crowd that size for hours. I insisted she take the tickets. She had changed her mind about going when she came to pick them up for reasons of her own. We went for a short walk. The show wound up being canceled so no one went.

Then came the lockdown. I remember thinking a two-week lockdown was not a lot to ask. I thought it would be a little longer. It became clear pretty quickly that it was going to last much longer. Much longer became a lot longer. It was tough as the season changed from summer to fall that it was going to go into winter and into 2021. Here we are almost ten months later.

A good chunk of 2021 will be spent as a continuation of 2020. But I get ahead of myself. Back to 2020.

The biggest events for me personally were turning 50 years old, running my first 5K, and raising over $60K for metastatic breast cancer research. All three were connected. I am proud that I surpassed my fundraising goal. I’m overjoyed I was able to complete my run. My birthday was happy through and through.

Minor events make our lives. I made a batch or two of banana bread. I saw the Neowise Comet in summer. I set up a card table and draped it with a lace tablecloth to host friends for card making and pancake breakfasts. I began having breakfast each morning on my sun porch where I listened to the birds and let my thoughts wander. Other friends came over and we chatted on the backyard patio once or twice. I kept writing steadily. I spent time outside when it wasn’t too hot. I took neighborhood walks when my feet felt okay. Everyone scooted well out of the path of one another with a smile and a friendly wave. I took a lot of photos over summer. That took me into fall where I planned day trips to see old and new spots in Wisconsin and enjoy fall color. Workouts and book club kept me socially connected through Zoom. Meaning and joy rest just as much in the small things as they do in the big things.

Easter, July 4th, and Thanksgiving were celebrated on my own. Christmas too.

On November 10, 2020 . . .  I did a real push up. This is monumental. I’ll be honest . . . I did three. I did not go down very far, but I could get back up and I’m counting those. I achieved my goal of exercising every day this year. Some days were minimal but required more effort when I wasn’t up to it than days when my workout was more intense. What I considered my best depended on how I felt. I did my best every day.

My hair is longer and grayer than it has been in years. Thinner. I’m thankful to have any of it thanks to cold capping. Since these things all go together, I hope the lengthy and gray locks continue to grow.

I still have metastatic cancer to no one’s surprise. My health fluctuates between fair and fantastic depending on my mood, how much I worry, treatments, and time. I’m still here.

I remember people couldn’t wait for 2019 to end and be rid of it fast enough. My 2019 was a rather glowing shade of wonderful. I hoped 2020 would be the same. I understand the desire to move on from 2020 to 2021. Time marches on and we always hope what’s ahead of us is better than what we have at the moment. But each year, even if it has events that bring us to our knees, hopefully also has had a moment here or there where we’ve risen up and basked in the sun. May 2021 have more moments in the sun for everyone. I end my 2020 review with a prayer I found that encompasses every good thing my heart wants for all of us.

New Year’s Prayer

As the dawn breaks on a new year, let us give thanks for all we hold dear: our health, our family and our friends.

Let us release our grudges, our anger and our pains, for these are nothing but binding chains. Let us live each day in the most loving ways, the God-conscious way. Let us serve all who are in need, regardless of race, color or creed.

Let us keep God of our own understanding in our hearts and to chant God’s name each day. Let us lead the world from darkness to light, from falsehood to truth and from wrong to right.

Let us remember that we are all one, embracing all, discriminating against none.

May your year be filled with peace, prosperity and love. May God’s blessings shower upon you and bestow upon each of you a bright, healthy and peaceful new year.

Rev. Marcy Sheremetta

May 2021 be kind to you and yours.

Always.

Holly Hobby and Tennis Balls

‘Tis the season for gift giving.

I grew up in a family that was a bit over the top with the number of presents that my parents gave to their children. Discovering the floor covered with gifts under the tree on Christmas morning was such joy. There were toys as a child, then lots of clothes as a teen, and then more grownup gifts in adulthood.

My Holly Hobby doll was a favorite Christmas present. Santa brought her all the way from the North Pole one year. She played outside with me and still has a smudge on her right hand from some adventure. She even came on a couple of family vacations. We survived traveling cross country together long before the days of seat belt legislation. I remember riding in the front seat sitting on my mom’s lap while holding Holly Hobby on mine. That car had no central air conditioning. Sometimes my mom held both her daughters and our dolls at the same time despite a perfectly good back seat. Holly Hobby is still with me and lives on one of the beds in a guest room with the Bucky Badger I got another year from Santa. I know it would be nice if someone played with them again, but I decided long ago they both were staying with me. I’ve always been too sentimental.

Jewelry made excellent gifts as I grew older. Pearls and gemstones are treasured gifts that are more meaningful to me today than when I got them. I think I need to wear these more often to dress up my yoga pants and more relaxed attire.

Gifts of lesser monetary value carry meaning, too. My dad was especially vocal about how he liked tennis balls that I received one year as one of my birthday gifts. It has become a running joke with a friend of mine years later. I liked the tennis balls, too.

Christmas will be different this year because of the pandemic. Gifts will likely be exchanged and opened by myself at home with some type of video connection. A cold garage idea was floated but I am not excited about that option. Home by the hearth works for me.

Holidays can be hard.

It was simpler when Holly Hobby or tennis balls was all it took to make me smile. I could give my dad an Old Spice soap on a rope and my mom a knick-knack decoration and all was well in our worlds.

There truly is very little I need in terms of material goods. I am fortunate to be able to buy what I need. It ensures I get what I want without waiting. Amazon Prime hasn’t helped. Giving myself gifts and treats are an important part of my self-care. Can I share a secret? Having just shared I don’t feel I’m too materialistic, I’m going to wrap my gifts to myself this year and put them under my tree.

To me, from me.

An unprecedented year calls for some new moves of my own.

Experiences and time together are more valuable gifts to me. I still want to get to Sedona. I’d like to eat inside restaurants. I would love to have friends gather in my home. I would just like to see friends in person. Anywhere. The biggest factor is what my life looks like after there’s a vaccine for COVID-19. I’d rather hang out with my friends than have some big extravaganza event that is stressful. Some may enjoy extravaganzas. Not my cup of tea. I’d enjoy that cup of tea in a relaxed setting much more.

I have the gifts of family, friends, and a beautiful home where I feel safe. I receive top notch health care. I am kind and have a good sense of humor. These are all priceless gifts. Call it the holiday spirit, but my life is good. Cancer is not good, but my life is good.

What makes good gifts for someone with cancer?

A permanent cancer zapper would be perfect.

Good gifts should match a person’s interests. It doesn’t hurt to ask if something is needed or what might be appreciated. Please skip the pink crap, cancer ornaments, or things that take up a lot of space. Food may be welcome, but some of us have dietary restrictions we are trying to follow or may not tolerate spicy foods. I remember a couple home cooked meals I received as part of meal trains when going through initial chemo in 2012 that were exactly what I needed. Gift cards for takeout or delivery are thoughtful. Books are great if you know what kind of writing or favorite authors someone likes to read.

Experiences are the type of gifts that mean a lot to me. Tickets to a show. Listening to a concert. An afternoon history lecture. A gift certificate for a massage. Hiking someplace I’ve never been. All of these aren’t possible during a pandemic. Hiking is possible but I am hesitant to venture somewhere less traveled on my own where I could get lost. I’ve gotten lost twice before on hikes. I’m not looking for a stressful adventure. Some familiarity is welcome during crazy times.

One former colleague I have known for years does something incredible for gifts. She and the adults in her family don’t exchange presents but pitch in together and make a substantial donation to a charity they agree upon. Last year it was my fundraiser for metastatic breast cancer research. It blew me away but is a gift idea that has stuck with me.

If this idea appeals to you, here are a few possibilities that do research or support cancer research:

More For Stage IV

One Woman Many Lakes

Mary Gooze is a friend of mine. She is the one amazing woman behind One Woman Many Lakes and creator of the More For Stage IV Fund. Both links above will lead you to the same site to donate. Incidentally, Mary is planning to raise $70,000 for the Stage IV fund for her 70th birthday in June of 2021. She has a separate fundraising page set up to track those donations you can find here.

As always, thoroughly research how money you donate is used and how much is allocated for research. For full disclosure, I am partial to research happening at Carbone Cancer Center if you couldn’t tell from the multiple times I’ve shared their link.  I know there are many reputable research facilities making worthy strides in research. Here are a few others that I have heard good things about outside of Wisconsin. I always look for pull down tabs for metastatic breast cancer research or a way to direct a donation for research to a specific cancer type such as childhood, lung, colon, prostate, etc.

Metavivor

Breast Cancer Research Foundation

Mayo Clinic

Memorial Sloan Kettering Cancer Center

A donation to research is a great gift any time of year.

Holly Hobby, tennis balls, and even jewelry aren’t bad either.

Happy gift giving to you as you go about making the world a bit brighter this season.