Write What You Know

To write what you know is one of the biggest nuggets of writing advice that comes from authors. It doesn’t matter if the writer is published or unpublished, well-known or obscure, or a beginner or someone highly established. Writing what you know allows the writer to draw upon personal events where details can appear more naturally and make the writing feel more authentic. This advice applies to so much more than just events. We feel a wide spectrum of emotions ranging from euphoric to gut wrenching as we live through these events. Writers know emotions and must write those emotions. I believe this is why we get hooked with a story we feel has nothing to do with our lives. It isn’t the mob lifestyle or unspeakable events from Nazi Germany during WWII that pulls readers into a story. We identify with characters who feel what we feel.

As a teacher teaching second graders, this often meant I read lots of informative pieces on playing with pets, narratives of a summer trip where a flight was as exciting as the destination, and realistic fiction stories about camping, sports, or school. Most kids have fairly similar experiences coming from the same geographic area and being so young. The joy of writing, experiencing success, and becoming more independent writers were always wide-ranging goals in any piece. I wanted kids to write what they knew. Writing about what they didn’t know was a blank page.

It’s the same with me.

As a reader, I look to sources who are experts. Mitch Albom. Sue Monk Kidd. Brené Brown. I go back to favorite authors as well as whomever I’m reading at the moment to reread passages and examine what made them effective. I read like a writer. I love words and storytelling. Even when reading fiction, I understand authors research their topics to make stories credible and realistic. Many factors make writing come alive.

I ask myself, as a writer, what do I know?

Cancer

Unfortunately, I know too much.

My mother had uterine cancer that was successfully removed through surgery. It gave me an early example that disease would always be caught early and without much inconvenience. I recall a couple of years later telling friends she had been diagnosed with breast cancer and that it was going to be harder but that she’d be okay. It was harder. Mom had a partial mastectomy followed by chemotherapy and radiation. I became an expert on her health and breast cancer knowledge. Information was power and I wanted to understand all of it. All was good for years. Golden years.

And then it wasn’t. She wasn’t.

Looking back, I’m not sure if she cared for all my pearls of wisdom that I’d learned. I likely was annoying. It’s very different when the shoe is on the other foot and you have been diagnosed rather than a family member. I want my information but have a bit of an inner attitude when someone who isn’t an authority drops false information at my feet.

My metastatic breast cancer diagnosis came about a month or two later on the heels of hers.

There is a lot I could write about from my experiences with cancer with my mom and from my own. I haven’t mined memories of it with my mom because of the pain. I don’t feel as much pain with my own. I’ve found it to be cathartic and a home to give voice to the pain and whatever other truths need speaking.

Others write from a very factual perspective of their experience. Expert background experience support their writing. They write from legal, medical, patient experience, and personal experience perspectives. Others share raw emotions and reactions to what’s happening in their lives through poems and deeply personal reflections. I tend to write about cancer from the lens of what happens to me and my thoughts about it. Factual information gets sprinkled here and there as it impacts my chosen subject or theme. We’re all invited to sit a while with these perspectives and stories of shared experiences.

Write what you know. I know cancer.

Feelings

Emotions were mentioned at the top of the piece. We all experience universal feelings. Fear. Despair. Loneliness. Humor. Love. Hope. Spirit. A small event of forgetting music at a piano recital can pack some huge emotions of not feeling supported, being humiliated, and hearing your parents lie to you about your achievement. It’s still a tough memory for me. This story can be more powerful than a story that retells a death in the family that is void of emotions. Emotions and feelings spill over in writing because the goal is for someone else to understand and connect with what was written. When I think of a common quality that’s at the core of favorite books, or dare I say even things I write, is the desire to be understood. We crave that as writers and readers.

Feelings are our emotional truths.

Stories of good times on Grandma’s farm help me preserve memories that I want to remember. Her home is a strong example of how emotions create the writing. I took a photo of her farm from out in the field one winter. My grandma, dad, and mom were all warm inside visiting after our Sunday meal. I wrote about how the people I loved were in the photo even though I couldn’t see them as part of an assignment in college. Later, I wrote a poem about it. Years later, this house is in disarray. Raccoons have taken over and hauntingly walk on keys of the damaged piano in the night. A cousin’s son and his wife moved onto the property into the more modern home across the drive when they married. They see the old house as dilapidated and scary (I do too) but more of my emotions are grounded in Sunday visits, time with Grandma, and playing with the farm cats. I sent my cousin’s son a copy of the poem so he could see the abandoned house as a home for a few brief moments.

Write what you know. I know my feelings.

Experiences

Small experiences can have big impacts. I remember winning a cake at a cake walk when I was about six and it was the first thing I ever won. It was a carrot cake with nuts. I was allergic and unable to eat it, but I had won something and felt special. Memories playing at the playground across the street fill many childhood memories. Camping in Girl Scouts. Family vacations. Being bullied. Never knowing if you really fit in. I remember holding my dad’s hand in the ICU and watching it shake trying to find mine after one of his heart surgeries. I have entertaining experiences throwing dinner parties, both fun and disastrous. News of a good scan. Not so good news. There are arguments and celebrations. Little events make a life. Although short, this brief list weaves together experiences with emotions. Most are waiting to be written.

Hope isn’t an experience as much as it is a belief. This belief has been a driving force in some of my experiences and many of my thoughts. Links are provided if you’d like to go back and read past posts. Hope is what I know.

Hope, Belief, and a Monthly Planner

Doom Dibbling or Hope Harvesting

Write what you know. I know my experiences.

Teaching

I know a few things about teaching after twenty-three years in the classroom. Best practices in curriculum and child development have come and gone. Co-workers and students have provided so many stories that you can’t make up. Classic one liners that still make me laugh. One year each child reminded me of a different breed of dog. I loved that class. One year there was a child who had some obvious unidentified emotional issues but who could work quite successfully under his desk. I loved that child as challenging as he was. Another year there was another child who inched her way closer and closer to the door and thought she was hiding. She was a character. I remember mistakes I’ve made like working with glitter as part of projects. I could write about lockdown drills. There is endless material. I can remember where I stood when I learned my dad had died. I know where I was when I got the call that my mom had taken a turn and the end was near. I can bring up the moment where a friend told me she was pregnant. The day I shared with my students I had cancer and couldn’t be with them is still fresh. So many nonteaching things happen within the walls of a school. The things we’d hear if those walls could talk.

I was happy teaching. At times I was frustrated. I felt successful, secure, and safe. Teaching was home.

Write what you know. I know teaching.

I’m not the only one who knows these things.

What do you know?

Final Port Update

It works!

My 3rd port is the charm.

Attempt #1 didn’t get very far because a port couldn’t be installed again on my right side. My surgeon tried several times but the needed vein on that side had narrowed too much for a catheter to be inserted.

Attempt #2 was that same day. I was handed over to a different surgeon and went through surgery number 2. A port was successfully installed on the left side. I felt quite energetic after both of these.

However, it didn’t work. Somehow it flipped medially and was facing my sternum. The veins in my arms took a beating for a couple months. It took a long time, too long, to get the next attempt scheduled.

Attempt #3 was successful. A larger port was installed about a month after attempts one and two. It’s staying in its pocket and not going anywhere. I can feel the bumps in my chest used as a guide to center the access needle. It was easy to access and is working as expected. This one is a keeper.

The whole experience reminds me of the movie Groundhog Day. I don’t remember how Bill Murray broke the cycle, but I hope I finally have. In one version my pre-op and post-op rooms were different rooms on the 4th floor of the hospital. This last (and final) time I had a private room with a view of the capitol on the 10th floor. I had the same surgeon for the last two – the same anesthesiologist for all three. Each surgery version seemed slightly different before I dozed off. I got a bit closer to what I needed each time.

This all took about two months. From an emotional level, it was exhausting. Having any surgery would do that, but to keep having the same surgery over and over is annoying. Thank goodness it was minor.

If you missed the port drama and would like to read more, you can do that here.

May my days ahead and yours be easier.

Cancer Haiku

Haiku is a form of Japanese poetry that usually is about nature themes. It’s written in three lines of five, seven, and five syllables. I find it a beautiful way to create images and stir feelings. Writing it has made me a stronger writer because I must be concise with a finite set of syllables. I often find myself walking around thinking in syllables. I have broadened the scope of my themes when I write haiku to take on personal experiences as I live with metastatic cancer. I offer glimpses into my heart with a bit of that imagery and feeling I’m hoping comes across in seventeen syllables. The more I write, I better I get. I hope you connect with them in your own way.

I answered the phone

the voice said you have cancer

and everything changed

but you look just fine

you can’t be metastatic

you do not act sick

tears on my pillow

tears and sobs in the shower

tears behind a smile

chemo in my veins

chasing after cancer cells

killing good and bad

you’ve stolen my hair

my eyes have a lifeless look

I’m pale, weak, and scared

scars on the outside

reflect little of being

scarred and scared inside

we can land on Mars

and urgently make vaccines

we can’t cure cancer

who is this person

who stares back in the mirror

she looks familiar

the dreaded scanner

I lie inside motionless

hoping for good news

nervous in a gown

waiting for fate to unfold

in the next minutes

we need more research

and more effective treatments

to save those we love

cancer spread elsewhere

is known as metastatic

and cannot be cured

wicked cancer cells

how did this happen to me

how is this my life

cancer side effects

suck everything out quickly

that helps us feel well

sleepless once again

I lie awake unable

to dream something else

positive thinking

balances hope and science

when you have cancer

spring turns to summer

my next season is unknown

I live in the now

petals on a rose

lovely and soft and alive

how long will you stay

bad thoughts creep inside

my heart about when and how

that I push away

dying is rebirth

to where our souls remember

and feel love and light

Cancer and Faith

Cancer makes faith and religion harder for me. I’ve always questioned and still believed. I haven’t wavered on what I consider the big things and feel each of these main points is clear enough to stand on their own. I am firm on these aspects of my faith:

• There is a God (or universal being, higher source, energy).

• God is love and God loves all of us.

• Religion is not God.

• Faith and religion are not the same thing.

• I am a spiritual being having a human experience in a body.

• Our purpose is to be happy and to help one another.

• Heaven is real.

How does cancer muddle faith and religion?

  • Many of these reasons overlap one another. Many people live by believing God has a plan, a plan for them, and that cancer must be part of His plan. Buying into suffering and cancer as God’s plan contradicts my belief that God is love. God doesn’t want me or anyone to suffer. He doesn’t want misery and unhappiness. Cancer isn’t good. It isn’t a blessing. It isn’t part of a plan or grand design. It steals, destroys, and kills. Cancer isn’t God or part of a plan.
  • People beat cancer because God is on their side. Ooooh, this boils my blood. This implies those who die from metastatic cancer are somehow Godless. They didn’t pray hard enough. Their faith or belief wasn’t strong enough. No, no, and no. I pray. I have faith. Would this waver when cancer recurs or returns as metastatic disease? What did they do wrong? Nothing.
  • People can pray away cancer. Nope. Here’s one that overlaps with God being on someone’s side. Prayer is powerful. Miracles happen. People pray and still pass. God didn’t need one more angel. When people say they pray for me, I have to wonder what specifically is in their prayer. Is it that I don’t suffer? Is it I have more time? Is it that effective treatments are matched to me so I have a complete response? Is it for a miracle? Some of these prayers can contradict one another. I don’t want anyone’s prayers unless they align with my prayers and goals for health and life. Maybe it’s just something some people say and they don’t follow through with the prayer part.
  • People with cancer must have done something wrong and have gravely sinned. Honestly, I don’t hear this one too often because of the company I keep, yet I know there are groups of people out there who believe such nonsense. They aren’t my people and I believe there is something fundamentally wrong with their belief system if this is something they believe.

How can God exist and cause such suffering and pain?

I wish I knew.

A good friend and I have an ongoing discussion on the existence of God and why bad things happen to people and in the world. She questions a lot more than I do and has become agnostic over the years through watching her father pass from a long slow decline after a stroke and other health issues, and seeing her mother hidden inside a body ravaged from Alzheimer’s disease. She knows what I’ve gone through losing my parents. She’s been there for me as I live with metastatic cancer. Events in the world eat at her belief like a parasite. There is too much suffering for her to believe God exists. She looks to me and I confess I have a tough time refuting her arguments. I don’t think I’ve helped her, and I struggle not to have my own beliefs erode.

What can I say? How can I reconcile God’s existence and why bad things happen?

The internet hasn’t helped me at all. Lots of Bible verses surface. If someone already questions belief in God, these are hardly helpful. I keep a journal of quotes from many sources that support my beliefs. Bible verses are included in these. I tend to use broader examples from everyday life and the world. Furthermore, not everyone is Christian, and there are many other good fits for someone looking for the right home for their beliefs. Attaching a label to your beliefs doesn’t do much for me anyway. I’m more of an action-based gal.

My belief is not up for debate. I know where I stand with God. I believe. My prayer life is good.

Cancer doesn’t even need to be the problem, the plague, or the evil applied to my reasoning. Replace cancer with COVID. Use the January 6th riots on the Capitol, the violence, and the attempted coup on the US government as your lens. Take terrorism, racism, poverty, homelessness, domestic abuse, destruction of the environment, lack of mental health resources, drug abuse, natural disasters, or something else when thinking about why bad things happen. Does saying God has a plan work here? How about God being on someone’s side (the wrong side) when these bad things happen? Did people get what they deserved due to some grave sin? Of course not. It doesn’t hold up.

Somehow saying God has a plan when someone is diagnosed with cancer or dies from cancer is supposed to comfort people. It’s the exception to the above scenarios. It’s unsettling, uncomforting, and not an exception.

I’m going to keep something incredibly complex as simple I can.

Bad things happen because

• of others’ actions (free will).

• of our own actions (free will).

• of natural disasters (nature).

• of imperfect science (imperfect bodies / science).

• of unknowns (unexplained).

The unexplained is where GOD comes in. Some things are not for us to know. Why do we think we must understand everything? We are only humans and God is divine. This is where it gets a little sticky because it’s the central question. GOD is an unexplainable entity. We use words like crimes, tragedies, disasters, and accidents to explain horrible events.

Good things happen because

• of others’ actions (free will).

• of our own actions (free will).

• of nature (nature).

• of science (research / science).

• of unknowns (unexplained).

The unexplained is where GOD comes in. Some things are not for us to know. Why do we think we must understand everything? We are only humans and God is divine. We use words like miracles, blessings, gifts, and destiny to explain wonderful events.

The reasons are the same. Our language and perceptions change. Our language is the construct. Faith isn’t based on facts or language. Belief is the real deal.

How do you explain love? How do you explain a soul? Why did we develop brains that allow us to feel compassion, sadness, and joy? How do you explain consistencies across time and cultures throughout history and present day that all have similarities in worship and a higher being? Yes, I have lots of questions and I believe.

We are here having a human experience – we are more than our bodies. That’s what it means to BELIEVE.

God comes down to belief.

Thank you for reading.

Opening Up About Antidepressants

I have always been a crier. It’s how I cope when I’m upset. Some people are shouters. Others storm off in a huff. Shutting down and not dealing at all is another option. A good cry helps me let go of pent up emotions and move on. I have always found it to be a release. I feel better and stronger after I’ve cried my eyes out. I’ve cried in private, on the phone, with friends, while driving, at oncology, and in a public place or two. It doesn’t take much to open the flood gates.

Antidepressants have controlled the flood gates more effectively.

Antidepressants balance neurotransmitters in our brain that affect our emotions and mood. We cry less. They can improve our sleep, increase appetite, and promote better concentration. These are all improvements over being depressed. I’ve learned they also can be used to treat anxiety and panic disorders, obsessive compulsive disorder, as well as physical pain like fibromyalgia.

I am all for less depression. Honestly though, I never thought crying was bad. I still don’t. I’m friends with my tears because I know how they work for me. I never have been in favor of stunting my emotions. I want to feel my feelings, happy or sad. After I cry, I feel better. Crying helps me work through feelings and gets me to where I need to be.

My first experience with antidepressants was seven or eight years ago. My initial treatment for metastatic breast cancer was finished. I was back teaching. My mother had died from MBC. There was other family stress. I was an emotional mess inside. Everything was just too much for me. My oncologist thought I had crossed the line from between okay and not. I had asked and I agreed. I don’t remember what the drug he prescribed was called because I only stayed on it two days. I remember sitting on my couch the entire weekend staring blankly into space. I didn’t move. All my thoughts were in slow motion. I’d tell myself I needed to get up to do such and such and it would take hours for me to move. I didn’t want the rest of my life to be like that weekend. I needed to enthusiastically teach and respond to twenty-something second graders the following Monday. Off the drug I went. It wasn’t for me. Reflecting back, I needed to give it more time or adjust the dose, but I wasn’t willing to try. I’d rather cry and feel what I needed to feel, thank you very much.

Timed passed. I learned how to manage. I knew where I could get support. I knew which friends I could lean on a bit more when feeling upset or out of control. Life felt normalish. I would cry because that’s what I did. If I cried every day, that was normal for me. It passed and I felt better. I thought it was normal to cry so much because that’s what I did.

It was suggested I return to Taxol when I needed to change treatments for metastatic breast cancer in December. I developed moderate neuropathy when on it back in 2012 for my initial treatment of Adriamycin Cytoxan+ Taxol. I regained some of the feeling in my feet over time, but that feeling of tiredness and numbness never left completely. I learned to ignore it and worked on my movement and balance. I wore comfortable shoes that pampered my feet. I loved foot massages to stimulate feeling. I had gotten to a good place with my feet when returning to Taxol was suggested. Neuropathy was of course one of the potential side effects I felt was almost certain I’d see as it had already happened once. I did not want that to happen again and didn’t know if I could endure it again. It would be worse than the chemo itself. I’d experience more loss as pain free movement would be greatly diminished.

Apparently, I have an oncological pharmacist at UW Carbone that I never knew I had. She is fantastic from all my conversations with her on the phone and through MyChart. She suggested Duloxetine, an antidepressant commonly known as Cymbalta. It has been found useful in preventing neuropathy. I was in. I didn’t want to do an antidepressant because of my previous experience with one, but avoiding neuropathy was a deal maker. I’d been looking for an answer to this permanent side effect for years.

I started in December with a low dose 30 mg for a week and then progressed to the regular dose of 60 mg. A Saturday came around that marked about two weeks of being on Duloxetine. I remember realizing I felt relaxed mid-morning or early afternoon. I was having a pleasant day. It took me most of the day even to settle that this foreign feeling was indeed relaxation. I could feel it especially in my shoulders. They weren’t tight or tense. It felt like I had taken a Lorazepam and I hadn’t. I decided it was me and I must be doing something right, be it sleep, exercise, nutrition, or a combination thereof. Good job, Me!

The next morning it hit me that it was the antidepressant when I went to take it along with all my other medications and supplements in my personal pharmacy. I felt disappointed that it was the drug causing the change and not my own doing after all. Sunday continued to be just as relaxed as Saturday. Relaxation and happiness was a foreign feeling. I checked the calendar and yes, I had been on Dulox for about two to three weeks. It had kicked in and its effects were obvious.

I didn’t expect I’d feel happier on Dulox. I did. I laughed more and did not get rattled at appointments. I didn’t feel doomed. It’s been an unexpected benefit.

It’s having the desired effect I wanted – neuropathy has been kept at bay. It’s the three-month mark and my feet feel pretty much the same if not slightly better. I will stay on this drug as long as I keep getting this desired result. I am very happy for my feet. Hand-foot syndrome had tortured them over summer. Not having moderate to severe neuropathy means just about everything to me. I need to move.

Dry mouth has been a less enjoyable side effect. Some days are worse than others. It has not helped my sleep. I also wonder if it’s removed a filter. I blurt out opinions too freely that I once only said in my head. Most aren’t awful or particularly hurtful. They are bluntly honest. It’s probably more due to freely offering reactionary opinions to the TV too much during a pandemic when I’ve gone without conversation.

A stigma of silence comes with taking an antidepressant. I had told only two people I was taking one before sharing it here. There’s an unspoken message that you must not be tough enough to manage life’s challenges without help, you have a mental problem, that you are somehow more fragile than you were a moment ago before this news was shared. I’m still pretty quiet about it, as I am with the other medications and supplements I take. It’s private information. I also feel embarrassed. I don’t feel embarrassed when I take Ondansetron if I feel nausea, or Metformin to regulate glucose levels. The difference is those are meds for physical needs. There is nothing for anyone to feel embarrassed about if they take medications for their mental health. Forget that I’m on it for neuropathy. I don’t think people will associate it with that need. It doesn’t matter. I know what I need. We all do. If we need an antidepressant for whatever reason, we need it.

It’s interesting though how many others I’ve learned take antidepressants. The teaching field has more teachers than I would have guessed who have a prescription for some type of support. Is that normal? How does it compare to other professions? I don’t know. What is harder about life today than when our grandparents lived? Is use more prevalent today simply because these drugs are available? The answer to that last question is undoubtedly yes.

What has happened to my tears? The first time I cried after starting Dulox was on January 26th. It was a good month after starting the drug. I was missing my mom. My cry didn’t last long and amounted to a few crocodile tears rolling down my face. It sounds strange but crying made me feel happy because I was still able to be sad. I had worried I’d never cry again or be able to experience normal emotions. I have cried a few times since then, but it isn’t the same. Now I worry there is something wrong with me because I worry about not crying enough. Feeling emotionally flat is another side effect many experience. I mentioned crying helped me work through feelings and took me to where I need to be. If I cry less, I still need to work through feelings and wind up at the right place emotionally.

I have a few issues and that’s okay.

Neuropathy isn’t one of them at the moment. I’m going to take that as a win.

A Day of Surgery

Having a port for cancer treatments and blood draws makes life easier for me as I live with metastatic cancer. It even can be used for contrast dyes that are given during all the scans that come with MBC life. Whereas having the port is easy-breezy, getting one removed and replaced presented a few bumps. It took two procedures to remove it. You can read that story here if you missed it. It also took two surgeries to get a new one.

The procedure had already been rescheduled once due to what best can be described as communication glitches between departments that share patients from time to time. It was finally scheduled one day before treatment so I’d be good to go. Maybe I was supposed to feel some anxiety. I thought of it as a small deal in terms of hospital events. I could let my sister feel that stress. When she dropped me off, I told her I was psyched. Bring on my port!

I have been fortunate not to have had much surgery in my life. I had a couple of breast fibroids removed in my early thirties. I pushed for surgery when I was diagnosed with metastatic breast cancer but failed to get it and I was told it wouldn’t benefit me. The cancer had already spread. Getting my original port has been one of the only surgical experiences I’ve had.

The same surgeon who put in the first port was placing the new one. He took out the old one when it had leaked. He came into my room in pre-op and went over necessary details. He told me I was I difficult to sedate when he removed it weeks earlier. I do well with local sedation or general anesthesia. With conscious sedation I move around too much. I do well with general anesthesia and wake up pretty intelligently. Good to know even though I plan to be done with surgery for a long time. My spirits were up during our pre-op discussions. I announced to everyone I was going to rock it. Off I went.

I didn’t rock it.

I woke up fairly alert in recovery and learned a new port wasn’t placed. I hadn’t seen this coming and it hit me like a ton of bricks. The thought was the vein had become too narrow and scarred. From patient notes, I read an ultrasound was successful in accessing the right internal jugular vein. Multiple attempts were made to advance the catheter portion of the port, but there appeared to be a central stenosis (narrowing). Medical speak became too technical for me after this but I understood the gist.

Another surgeon from Interventional Radiology came for a consult. I would be handed over to him since I required more specialized attention. He was an overly cheerful sort who shared bad news with a smile. It was annoying and I said something to the effect I wasn’t as happy with this news as he seemed to be. He chuckled as he told me he was unsure if a port could be placed on the left side. Stenosis needed to be ruled out. Other impacting factors involved finding an available OR and more importantly a free anesthesiologist. These were all strikes against the likelihood of my getting a port that day no matter how badly I wanted one. What would I do long term if the left side couldn’t be used? I asked my new surgeon to please try to arrange it.

Yes, I wanted a new port that day. Thoughts ran through my head about rescheduling again. Maybe the third attempt would be the charm. Rescheduling would mean more fasting, another negative COVID nasal swab, and arranging a ride for another day. I’d need to do laundry the day beforehand to check off boxes for clean sheets and clean pajamas. I would need to shower at night and in the morning with special antimicrobial soap provided to me. I would have to emotionally decompress and then start from scratch another day with no assurances it was even going to work. I would need to do food prep ahead of time so I’d have good food when I got home. These are all hidden preparations that go unseen when someone pops in for a quick procedure. It’s work for the patient, too.

My surgeon returned rather pumped that it was my lucky day. His enthusiasm was remarkable and I was equally thrilled with his news. An OR was available and an anesthesiologist found. It turned out to be the same one I had in the morning. I was happy to see her for the afternoon session. She knew me and my history. Arrangements were made for something called a central venogram and left side line/port if central stenosis could be ruled out. The easiest way for me to explain a venography is imaging of veins. What I didn’t understand until moments before I went to surgery was I’d be under for this part. If a good vein was found they’d go straight into placing the port. I’d wake up not knowing if it was successful or not.

I hate not knowing. I hate not being aware of what’s happening to me. That happens too often with cancer. I hate waking up and discovering I had on a different gown. How did THAT happen? I already was the most underdressed there. I suspect this may be standard to help protect patients from infection and keep the environment sterile. It’s a bit of a mystery. I guess what happens in surgery, stays in surgery.

I loved waking up and finding out I had a shiny new port. It was on my left side which means I have symmetrical scars. It’s not the look I want, but it’s the one I need. Maybe it’s time for a tattoo. I’m entertaining a simple cross with the word hope or perhaps simply a heartfelt expression like Bite Me. One fits my personality better than the other.

Diagram of a PowerPort. Notice the three small bumps on top that are posing a problem in feeling them.

Cheerful surgeon returned to check in on me. I was more cheerful than he was in this instance. I exclaimed a hearty “Well done!” and adopted my pandemic gesture of hands in prayer to express gratitude. I often use it in greeting as well. It works for many things. I followed up with an air high five that he was happy to return. Shortly after this, I was able to leave, having arrived at 8 AM and finally leaving around 6 PM.

Living with cancer has taught me much about priorities with health care. There is a lot on my plate. I have found I need to identify and stay true to the biggest priority whenever I have an oncology visit, treatment, test, or something else related to my health. The day of surgery, my priority was getting a new port. My priority the next day was getting treatment. As it turned out, my cancer center couldn’t use the new port because their policy was to wait a week to use new ports unless needles had been left in ready for use. Hmmph. I was disappointed but knew I could still have treatment through an IV. Treatment was the priority.

My priority the day after treatment was ice cream.

My new port has been used once, and it wasn’t easy-breezy. It flushed easily yet a blood return was hard to get. It took three stabs and lots of pushing down on it and repositioning the needle while still stuck into me. Blood finally got flowing. On my next treatment, four people tried. Once it couldn’t even be flushed. Once it returned pink blood, not red enough to count. No one can feel the three bumps needed to access it well. It was another treatment day with an IV line.

I’ll have an x-ray early next week to see what information that provides. After all the hassle to replace it, it looks like a third surgery is a good possibility. Insane.

Figuring out what is going on with the new port is one of three big health priorities for next week. I hope it is an easy fix. My port business is even more important than ice cream. I can’t wait for my port to be fixed and ice cream can move up on the list again.