Love Letter to My Future Self

A writing prompt is often given to write about what you would tell your younger self. I think the idea is an older and wiser person could reflect on the insecurities that never came to fruition. Maybe it’s an opportunity to focus on all the positives that have come to pass. As we age, we learn about what matters in life, where we find joy, and experience a stumble or two we’d like to avoid if given the chance. We don’t get to go back in time for do-overs. My younger self would feel doomed if I told her she wound up with metastatic breast cancer at 41. Wouldn’t she have the opportunity to change it? She sure tried. She/ we/ I had diagnostic mammograms for years in our 30s due to my mother’s breast cancer. It wasn’t enough. Cancer was missed. I know when I think this happened. I was dismissed and told not to worry when I was sweating profusely. Major sweat blobs. I think my lymph nodes were blocked, but I’m not a doctor. Iffy mammograms were followed up by ultrasound and I was always given an all clear. I can’t go back. Telling my younger self to be proactive wouldn’t help.

I was proactive.

Looking back at what could have been “if only” doesn’t provide comfort. The past is unchangeable. I think all of us feel a certain invincible quality when younger and that bad things can’t touch us until we are much older. Quite simply, it’s unbelievable. Our lives stretch out indefinitely in front of us when we are in our twenties and even our thirties. Our lives are finally just beginning.

So instead, how about standing where you are now and advising your future self? Now there’s an interesting prompt. It creates an opportunity where you can pause and dream about goals. I find myself looking back and forward. There are some logistic factors that don’t jive well. My future self would already know what happened in present time. Well, the metastatic breast cancer is out of the bag. I am wiser, know what matters to me now, and what brings me joy. For a few moments, I set my modesty aside as I think about my future. Here is what would I like to say to the me ten years in the future.

Dearest Kristie,

How did you make it to your 60s? I’m not sure, but know intention is something you carried with yourself day by day and projected into the future. Hope and sheer belief are part of it. Somehow you kept going.

You’ve been through a lot over ten years, but you’ve come out better for it.

Life is good.

As you know, you’re still awesome. People appreciate your perspective and wisdom. You are still a trusted ear where others share their private thoughts. Your sense of humor still makes many smile and laugh.

I’m proud of you. You never gave up belief that you could go into long term remission. You continued to give back to Carbone Cancer Center. They listen to you, sort of. You’ve supported their research. You’ve spoken publicly at various functions. I am glad you are working for others in hope they have the same outcome as you. You are a driving force.

I know you’ve worked hard. You’ve had hundreds of treatments and endured even more side effects. You’ve submitted to so many tests and scans so you would have information to plan what’s next. You’ve swallowed supplements and medications that have improved how you feel.  You rejected norms, medians, and negativity from Day 1. You’ve embraced exercise, therapy, affirmations, and surrounded yourself with those who are supportive. You’ve even tried a few crazy things. You’ve worked on having fun and staying hopeful. You made plans. You worked hard.

You look outstanding!

Seriously girl, how do you do it? Cancer ages a person and it did on the inside. Lots of physical things happened on the inside that made you an old lady. And there was a good year during the COVID pandemic where your hair and outward appearance took some punches from tough chemo. Oh, how you loved your yoga pants! You still can’t decide if you’re more gorgeous with white shimmery hair or the more youthful brownish red from the magic bottle. Keep up the good work. You are beautiful.

You still help others. You have found a way to connect with children again and share the love of learning and thinking. Besides being happy and healthy with a few people that love you, it’s really all you ever needed. Hold on to it tightly.

Keep holding on to belief and hope. Never abandon these. They will always serve you well.

I know there are readers who are thinking I’m delusional in writing about my life ten years from now. Researchers can’t put their finger on why some survive for decades with metastatic cancer. What if it’s pure denial? What if it’s the delusion and the denial that got me here? Denial has its merits. I’ll do me.

You are loved by many, including yourself. You’ve tried to return that love to others.

Much love,

Kristie xxx

A favorite photo from spring

This is very similar to another writing activity where the writer sits down, envisions the future, and writes about life ten or twenty years from now envisioning it as well as it possibly can go. There are connections to taking an active role in your life rather than a passive one, setting goals and planning, and daring to dream. I completed this activity about five years ago. It is filled with some very concrete ideas. Retiring with a full retirement package came true much earlier than planned. I was on medical leave, so the writing was on the wall. Writing was mentioned, blogging was not. I’m now well into my third year blogging.

I hope you make the time to write yourself a letter and tuck it away for a decade or so. Time flies. Don’t wait. Happy writing.

Always.

Cancer and Exercise

The American Cancer Society recommends at least 150 minutes of moderately intense activity each week for adults. This is equal to a brisk walk of about 3 miles per hour. More vigorous activity where you raise your heartbeat and sweat for 75 minutes each week can be swapped for the 150 minutes. Spreading these minutes throughout the week is preferred over cramming them into one day or activity.

Exercise won’t prevent cancer, but it can lower risk. It’s shocking how many sources still falsely claim exercise prevents cancer.

With that being said, exercise can improve overall survival for those going through treatment and for those with metastatic cancer. I have heard this from my doctors, nurses, and so many articles I’ve read. Overall survival is still a murky, unspecified amount of time. I do believe exercise has been a factor in my survival with metastatic cancer.

Exercising while receiving treatment for cancer is encouraged, always with the caveat to do what you are able. Run it by your doctor (pun intended) if you’re starting something new. Walking, lifting weights, running, yoga, swimming, etc. all reap similar benefits of maintaining healthy weight, improving heart and lung fitness, increasing muscle strength and endurance, and managing stress. Boosting immune functioning, energy, and improving sleep are additional benefits of exercise. The benefits go on and on.

Maintaining a healthy weight is a problem for me. I’ve maintained my slightly above average weight for 2-3 years. I blame it on treatment drugs and steroids. Ice cream has always been in the background. It’s hard to blame something you love. Whether my weight is considered healthy or not, I’ve maintained it in addition to maintaining an exercise and movement schedule.

I exercise even on days when I feel poorly because I believe it can affect my overall survival. I don’t have a choice. Sometimes it even makes whatever is bothering me (mood, fatigue, aches) go away. I upgraded my Fitbit to a higher version and now need to contend with something called zone minutes rather than just total active minutes. These zone minutes are the equivalent of the 150 minutes of moderately intense activity. Whereas I had no trouble reaching my active minutes, it was a wakeup call that I needed to do more to meet cardio targets. Now I’m getting those minutes and more thanks to work with my weights and walking.

Personally, I have many reasons why I exercise.

• I know I’m healthier when I exercise.

• I can see myself making progress and getting stronger.

• Regular exercise, especially cardio, boosts my immune system. When I encounter bumps like an infection or minor procedures, I think I recover faster if I’m making an effort to care for my body. If this is only psychological, it still works for me (much in the same way I see dark chocolate as a health food).

• From a treatment perspective, exercise and moving helps me do better with treatment and side effects.

• Exercise also keeps me alive. Again, I think it makes a difference. Staying alive is a HUGE benefit to me.

I know it takes me longer to achieve physical goals and longer to recover once I have. I exercise so I have a chance at keeping up if I’m with others.

• Exercise relieves stress and provides more energy.

• Exercise makes me feel more like me.

• I exercise for me and I do it for those I love.

I mentioned above that exercise helps me deal with bumps in the road better. A case in point involves issues I’ve had with my port. I had zero pain and didn’t take one Tylenol after it was replaced. The next morning, I got up early to do weights before my treatment. I started literally with just the motions and used lighter weights before feeling comfortable to do my normal routine. The day after that, I walked my 5K route. My surgeon said he wouldn’t tell people to alter any of their activities, so I proceeded as normally as I could. Exercise is part of my normal routine.

Walking is my favorite way to exercise. I don’t need a power workout every day. A brisk walk of 3 miles an hour done a few times a week surpasses 150 minutes a week. Breaking it down to 30 minutes a day for five days a week is another way to get your minutes. Some of the nitty gritty behind the health benefits of walking include better heart and lung fitness, stronger bones and improved balance, and increased muscle strength and endurance. Walking can also help manage conditions like high blood pressure, joint and muscle stiffness, and diabetes. No fancy equipment is needed, and it can be done almost anywhere. Just be sure to avoid cars, wild animals, and cliffs and such.

Weights are my second favorite way to exercise. I love meeting goals and seeing myself improve. I hate backing off when I’ve needed to readjust my goals and do less when my body isn’t up to lifting. Then I lose ground and feel frustrated because I have to work three times harder to regain half of what I once was able to do. The satisfaction is just as sweet when I reach a new (or new again) benchmark. Presses, deadlifts, squats, swings, rows, and halos give me lots of variety and opportunity for a love hate type of workout. I like that strength training increases my bone density and reduces the risk of fractures. I don’t mind the increased muscle mass either. Perhaps this is because it’s such a minimal change in my situation. I’m not known for my abs of steel . . . yet. I’m not sure what I’m known for.

Swimming may be a great choice if you’re looking for something that takes stress off your body and joints. It has many of the same benefits as walking in terms of cardiovascular and pulmonary health, maintaining a healthy weight, and building muscle strength and stamina. Walking is easy on a person’s joints, but swimming is even easier on joints because the water removes a lot of impact stress on your body. I have never been a strong swimmer and have lost any minimal ability I had other than floating. I thought it would be an easy way to work all my muscles and stay fit and was almost ready to sign up for lessons. Building endurance and cardiovascular fitness might even be fun and not feel like work that involves sweat and exhaustion. Then Covid-19 hit and my thoughts of swimming sank like a steel anchor.

Biking is another one of my favorite ways to exercise because it involves fitness with enjoying bike trails. I joke that it’s something I can do while technically sitting down, but I’ve realized I’m fairly serious about it. Sitting down has its merits. Like swimming, it’s easier on the joints and is good for building muscles. I don’t get to bike as often as I’d like because of the effort involved attaching the bike rack to my car, loading and unloading my bike, and making sure I still have energy to do some quality biking.

Yoga looks easier because it has some of those sitting down poses, or even lying down poses, but it’s deceiving. I’ve made this comment before. Maybe this is because I find strength, balance, and flexibility at the same time incredibly challenging. Yoga pushes me. Holding poses forces me to slow down and not try to lift more or be faster. Sometimes just being in the moment is work enough and that is the magic of yoga. Working on flexibility is good practice for me. God knows my life needs physical and emotional flexibility.

Being physically fit can make living with cancer a little easier. I’ve found information on exercise is out there for those going through treatment and post recovery. Exercise is addressed as making short term treatment easier and post treatment recovery smoother. It is touted as reducing risk for everyone, not a guarantee. I had trouble finding much on how exercise helps those of us living with metastatic cancer. It figures. The Stage IV population is frequently left out of topics that includes other cancer stages. I’ve made the decision to extend the exercise recommendations to me and those with Stage IV. Dealing with ongoing cancer is as important as short term treatment and recovery. We all need to be included. Lessening side effects, extending overall survival, and feeling good are all important. For everyone.

Always.

For further reading: My friend and fellow blogger Gogs Gagnon has written about the importance of exercise as part of his post prostate cancer survivorship plan. You can read about his thoughts and perspective here.

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.

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.

Treatment Day Lessons

My treatment for metastatic breast cancer happens at a teaching hospital. It isn’t unusual for a resident or intern to accompany my oncologist during my office visit. I have become a quick study as to who seems confident, empathetic, and knowledgeable in a few short minutes. Some interact more; some merely observe. These residents come and go.

What I failed to realize until a couple of weeks ago was just how much teaching goes on between my treatment nurses and myself during treatment and from that experience. We learn different things as we teach together. Below is a description of what I took away from a recent treatment.

I’ll start with labs. My port had not yet been replaced at the time which meant an IV line was placed in my arm for the blood draw and chemo. Both arms have been used/abused generously from a hospital stay and a previous treatment visit. My port was so handy for my personal comfort and because of my hard to find veins. The IV Team was paged, and they came to detect a vein. I love that there is a team for this sole purpose. They rolled in with an ultrasound on wheels and searched for a vein. A few phlebotomists huddled round and we all watched. A perfect black round shape was found that was described as a juicy vein. It seemed newsworthy to the other phlebotomists that two different needle sizes were available to access veins and that I needed the larger one inserted. Now they know. I asked how long ultrasounds had been used to support vein detection. The answer was about 10 years. I couldn’t imagine what it was like before this when someone would be poked relentlessly multiple times to find a vein so blood could be drawn and an IV line set. Pure torture for someone like me. I also learned fewer people chose ports ten years ago. Now, the reverse is true.

Patients and nurses also have a lot to teach and learn from each other.

I was fortunate to have one of my favorite nurses assigned to me. Libby had only been my nurse once before, but I liked her instantly. She was thorough, caring, and interested in me. It didn’t hurt she thought I looked much younger than my age. Flattery will get you everywhere, right? I was thrilled to see Libby open the door to my room since the nurse who had showed me to my room and took my vitals struck me as unsure about the equipment. I decided she was new, good hearted, but new.

Libby had done her reading and read the medical notes from my recent hospital stay involving the leak in my port and a blood infection. The teacher in me always finds someone who does their homework impressive. I learned Libby had once been an education major herself before switching to nursing. Anyway, she sat down and wanted to hear more about exactly what happened and how my problems were discovered. She sat down to listen. That action also impressed me. When nurses have this information, it helps them look for signs and symptoms. I was more than happy to share information that could be helpful to other patients.

Later, Libby told me about some information that was shared with the nurses about an anonymous patient that had swelling the size of a golf ball on her neck where the cause was unknown. Guess who that was? I rather bashfully admitted that was also me. I felt like a problem patient. Yet, I was pleased that the other nurses had been made aware of the situation and what was done to address it. Furthermore, I learned that the special triage nurse who had come in to examine my throat and neck that day had questioned if the port was working effectively when an allergic reaction was thought to be the cause. I remember her coming in to assess me but had forgotten she questioned my port. It was ruled out because my port still returned blood. All this is important because it can help them connect dots faster in the future. I never realized I was being so useful by having all these problems. I sure know I’ve learned things I never thought I would.

One thing I wanted to happen during my visit was to have my sutures removed from my port removal. There was a small suture drama days earlier where interventional radiology told me still having these could pose a problem for them placing a new port. It was completely absurd and another long story. When I finally spoke to my surgeon’s nurse, I asked her if I could get someone to remove them while having treatment. I would be at a hospital after all and it shouldn’t be that hard, certainly not enough of an uproar to uproot plans. She agreed. Another nurse came in before my treatment started and took them out in minutes. It was so simple that I almost thought I could do it myself, but my small scissors and tweezers aren’t sterile and I’m not quite that crazy.

Finally, the original nurse who had shown me to my room returned. She had returned with some questions on cold capping. I’m thinking I must have a reputation for being approachable and somewhat informative. Her questions were pretty standard involving timing for post-cooling and then thawing. It’s different for different chemotherapies received. If it helps someone learn that can support other patients, I’m all for it.

Collaboration in patient care benefits everyone, including future patients. I never really thought about nurses possibly learning from me. Now, I realize it’s exactly like how my students taught me as a teacher. I learned tons from them. My role as the patient has similarities to that of the student. We all work together. My treatment day was a phenomenal learning experience for me and a good example of teamwork where I’m a valued member of the team.

Fearless Girl

The Fearless Girl is a bronze statue created by Kristen Visbal. The statue has come to symbolize progress and equity for women. The reason for her existence is much less inspiring. A large asset management company known as State Street Global Advisors commissioned it to advertise an index fund. Sure, it also promoted female empowerment and aligned well with International Women’s Day, but the initial motivation of the asset company makes its origins more of an advertising stunt. It was conveniently installed directly opposite of the famous Charging Bull statue of Wall Street which added drama in more ways than expected. Arturo Di Modica, the sculptor of the bull statue, complained about the deliberate placement of the girl statue, and she was eventually moved to a different spot in front of the New York Stock Exchange in lower Manhattan.

My opinion is her new location is better because all the focus is on her. There is nothing to detract away from her. Those who see her can connect with personal stories and interpretations about what she stands against fearlessly. It makes her more fearless in my eyes.

Image credit: pixabay.com

I believe Fearless Girl represents many favorable qualities. She embodies a confidence and indomitable will. There is something unmovable about her other than her 250 pound weight. It’s her stance with her hands on her hips and the determined look in her eyes. Although small, she is an image of strength and might. Can we all be her? I think the answer is we can.

Images of confidence, determination, and strength are important for me as I go about living with cancer. I muster up courage for office visits. I know what I have on my agenda. I attempt to hold my head high as I go about trying to pull off a persona of confidence, determination, and strength even though I have no idea what I’m doing. I don’t know if my inner and outer vibes match. I try and keep trying.

Granite is my chosen word for 2021. It came from an unexpected ending to a poem I wrote. It’s known as a hard, igneous rock. Granite is made up mainly of quartz, mica, and feldspar. Symbolically, it’s associated with strength, abundance, and protection. Because of its durability, granite has a long lifespan. Therefore, granite also represents longevity. It’s a good word for me this year to picture myself as a strong rock that will withstand wear and tear. I am durable. Like granite, I have longevity. I want longevity on my side. My image of granite strikes me as fearless.

What does it mean to be fearless with cancer?

I’m not sure. Fear is a normal and expected part of it. I don’t believe those who say they aren’t or weren’t afraid. Knowledge makes me less fearful, but I still feel fear. Being scared is okay. For me, being scared makes me more fearless. People call me strong or brave. All I’m doing is walking through the fear. It pops up even with non cancery things. I face it. Whereas I doubt I can eliminate it entirely, I know how to lessen it.

Tests and scans provide information and direction. Knowledge, information, and my feelings support me as a patient. I need the tests to plan for treatment. My mom didn’t want lots of tests when she had cancer. It presented even more unknowns and made it a lot harder to treat a cancer that returned metastasized. I believe my mom was fearless in her own way. It’s too emotional for me to put words to how I believe she faced her diagnosis. She didn’t talk much about what was happening. It was so emotionally and then physically painful for her. I’m sure my status factored into it. All I have are my observations and own feelings. My point is everyone works with fear.

Support makes me more fearless. I feel less alone when I share how I feel with people I trust. I feel less alone when others let me know they’ve been through something similar and feel similar feelings. My true friends are the best. Phone calls, emails, texts, and messages are treasured means of connections in this COVID world. Checking in and listening are huge comforts to me. We all need such support. As a writer, my voice has more power through my words. Blogging is a platform where I can reach out and share what’s on my mind. I appreciate the support I receive through those who read my work.

Being fearless as a patient means I ask questions. I research and learn. I speak up and say what I need, what works and what doesn’t. I am a part of my team and participate in decisions. I know I’ve weighed decisions thoroughly and made them in my best interests. My body goes through a lot. A wide range of emotions are felt. My voice gets heard. I can get upset and often have tears, but this is one of the ways I walk through fear. Tears do not make me a weaker person or less abled patient. They get me somewhere I need to be.

Living the way I want to live makes me fearless. Many of my plans have changed. Somewhere I learned not depend on others in order for me to do what I wanted. Independence has served me well seeing as I’m on my own living with cancer. I am thankful for my successful teaching career and the ability to support myself. So much is taken away with metastatic breast cancer. I certainly have given things up. I am grateful I am able to be independent, have a home I love where I feel safe, and the ability to set and achieve a few goals. I want to be seen, make a difference, and feel connected. I refuse to hide and wait for the next problem to present itself. I don’t want pity or to be told how I should be living based on what others have done. I am well aware that events in my life aren’t always pretty. It seems I struggle more than I’d like with what I think should be a lot easier. I believe we all have these moments. It’s how we handle them that can define ourselves as fearless or fearful.

Cancer is an invisible fear that shows up in visible ways. It creeps slowly at first when life hasn’t changed much. Then you qualify for disability and your health takes precedence over your career. There are medicines and side effects. There are many private tears and fake smiles. There are uncertainties and fear itself. There isn’t a day it isn’t there in some form. I stand as fearlessly as I can against the fear, scans, progression, and dwindling options, while always hoping for a cure. I stand with others against losing 119 a day in the U.S. These are our friends, relatives, coworkers, and others we’ve come to know dearly along the way through our shared misery.

I have a DOVE chocolate wrapper on my refrigerator with an inside message that reads to be fearlessly authentic. A wonderful thing happens with aging – you learn to be truer to yourself. I was more confident in my 30s than my 20s, my 40s than my 30s, and I would expect the same to be true in my 50s. We figure more out with each year. I’ve become more expressive of my opinions. I’m not willing to tolerate certain opinions or behaviors of others that violate my values. I am in a place in my life where I do what I want if nothing is standing in my way. I remove obstacles when possible. In terms of blogging, I write about what I want. It isn’t always about cancer, but usually there is a connection tying the piece together. I read a number of blogs and do too much comparing of others to mine in terms of definitions of success. If I were to change mine, I’d have to compromise my authenticity here, and I’m not willing to change me or my craft to fit in falsely somewhere else. There may be some cosmetic changes but the real me is at the core of the writing.

I never have been one to change to fit in. Most of the time I don’t think I fit in very well. It has become less important the older I get. Cancer has opened my eyes to myself even more. I’m authentic to myself and know who I am. Introverted and private with most, but I know my inner workings well and how I move best through the world. I know what traits I value. I try to demonstrate those and surround myself with like company. My personality and abilities as a teacher shined in the classroom. I believe I still teach by example. My efforts in fundraising, advocacy, and any cause I find important showcase my beliefs. Writing and photography presently reflect my authentic self. I am far from perfect. My imperfections may be some of the most authentic parts about me. In these ways, I embody my fearless girl authentically.

How are you fearless?

How are you fearlessly authentic?

What goes into being a fearless patient?

I’d love to hear your thoughts.

Cancer Hospital Stay

Sometimes relatively simple surgeries have complexities. One test can turn into two tests. A bright spot in my hospital getaway was I got results from surgeries and tests immediately or the same day.

Removing my leaking port would be categorized as a simple surgery. Ports are removed using conscious sedation or local anesthesia. The plan for me was to have a bedside removal in my room on my second day in the hospital. I would be awake. The area would be numbed. My surgeon would make a small incision at the port site, remove the port, and guide the catheter that was threaded into a vein out through the same incision by pulling it out. It would only take around ten minutes from making the cut to finishing. Prep would put everything closer to an hour.

Simple.

My surgeon, an assistant, and my assigned nurse at the time arrived in the morning for the bedside removal. I silently thanked my port for serving me well and was ready for action. My right shoulder and right chest area were exposed, cleansed, and then I was fully draped accordingly so that only the port area was visible. What I wasn’t expecting was that my face would be draped as well. I had on my mask, I couldn’t see, and was definitely not thinking about my slight claustrophobic tendencies. My breathing was remarkably even and calm.

Lidocaine injections were given to numb the port area. I felt nothing.

I was kept abreast (not sorry) of what was going on at my request. The cutting began. There was bleeding. I heard the word hyperemic several times with the implication that I was extremely hyperemic. I didn’t know what that meant. Afterwards, I looked it up and learned hyperemia is an excess of blood in the vessels to an organ or other body part.

At this point, I inserted a joke I had come across earlier in the day into the discussion. I don’t know what compelled me. I think I had a need to remind them I was there. “Do you know why ants don’t get sick? Give up? They have antibodies.” The assistant and nurse laughed. I have no excuse for my sense of humor because I wasn’t sedated. I found it fit a hospital setting well.

I thought it was funny.

It seemed that my being extremely hyperemic meant it was harder to get to my port. I heard more cutting and snipping sounds. Then my surgeon announced he was cauterizing the area. An electric tool began to buzz. I felt heat. I was being burned.

Seconds later came the smell of burning meat. Holy something, that was me being barbequed. My senses weren’t expecting that. Fascinating and also unsettling. I later learned that the cauterizing sealed cut vessels together so that I didn’t bleed all over. Sounded good to me. This was perhaps the weirdest thing that happened to me from my 5-night hospital stay.

After that came a period of more tugging and snipping, and a lot of tugging and pulling to free my port. I felt it and it hurt. I alerted them that I could feel it but was told it was normal. This felt like a lot longer than ten minutes. So, I began muttering to myself that I was fine and focused again on my breath. I was asked what I was saying. My voice boomed from under the drape coverings.

“I’M FINE. EVERYTHING’S FINE.”

This caused laughter.

I didn’t mean to be funny.

Finally, the port was free and out of my body. The next part of the plan was to just pull on the attached catheter that ran into one of my veins and have it slide out, freeing myself of it forever. Well, it was either stuck or thought likely scarred into my vein. I would need a step up of from this minor surgery to different minor surgery that was a little more involved and an OR would be needed. So, the port went BACK into my chest where it was covered with a gauze dressing and a large piece of Tegaderm. I was left with an open wound until an operating room could be booked.

Ummmm . . .  okay? Please insert your own reaction. I just can’t.

A time was reserved for noon that day. I’d be heavily sedated like a person is for a colonoscopy. My surgeon wanted me able to communicate in case the catheter had grown into a vein. I’d be put all the way under if needed. I am extremely interested in my health and wanted to be an observer in what was happening much like the foiled bedside removal attempt. I remember being wheeled into the OR. My glasses were off and everything was really blurry, but I remember looking up at the OR lights and trying to figure out why it looked like there were smaller blue looking lights inside the big ones. They reminded me of blue flowers. I heard voices. Nothing interesting was happening yet. Then someone shook my arm and I was awake back in the prepping/recovery room. Apparently, I moved around too much and needed anesthesia and missed the whole thing. It went well. My port was removed. The catheter part was only stuck and not scarred into a vein.

Renewed scars and a few stitches where my port used to be.

The next day a nurse practitioner from Infectious Disease visited. She let me know my blood infection was staphylococcus epidermis. This is a bacterial infection that is usually on top of the skin and shouldn’t be in the body. It’s not that uncommon. Echocardiograms would indicate if there was vegetation, or bacteria growing on the heart valves. The presence or absence of vegetation would determine how long I’d need antibiotics. It would either be a week or six-week course.

As an aside, she wore a stylish bandana wrapped around her head and was without eyebrows. She had cancer. I was amazed that she was working with patients in a hospital setting and expertly performing her job. We both even have the same oncologist. Meghann is in charge of making recommendations after my echocardiograms about how long I need to stay on antibiotics, when a new port can be placed, and ultimately when I can resume chemo. All my doctors and nurses here have been great and have had excellent communication with one another and with me. We locked eyes as I told her I knew she understood how important receiving chemo was and that I needed her to help be a voice for me in getting that as soon as it’s safely possible. I will take all the help I can get in getting support for my best care.

The transthoracic echocardiogram (TTE) is your regular no stress ultrasound echocardiogram where you simply lie there and the technician takes images of your heart with gel on a wand tool called a transducer. The image quality was poor and they couldn’t see much. I needed a transesophageal echocardiogram (TEE). A TEE required conscious sedation and a camera tube placed down a person’s throat to get clearer images of the heart. It sees structures that are hard to see with the TTE. Once again, I expected to at least be aware of dosing off, but all of the sudden I was out. I was awake again before I knew it. Good news with the TEE is that there was no vegetation (or bacterial growth) on my heart valves. This was the first piece of news that had gone my way during my stay. I needed one final dose of an antibiotic (dalbavancin) as an outpatient once home. That was a welcomed second piece of good news.

There are degrees of complexities and levels of annoying when living with cancer. Nothing with cancer is ever as simple as it appears. If my immune system was not compromised, would any of these things have happened? I may have been able to dodge the blood infection. Maybe not. My port probably would have still leaked. My new one will be placed this week before my chemo treatment. I hope for simpler days ahead where I sleep in my own bed and not one in the hospital.

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