Words can cause comfort or discomfort, happiness or tears, calm or incite. What upsets one person may not phase another. Words in the cancer world are no exception. Today, I look closely at a few of these words that bother me or cause debate among those who live with or have experienced cancer.
Cancerversary is not one of my favorite words. It is used both by cancer survivors and those living with metastatic disease. For survivors, cancerversaries mark one more year of a return to health, one more year away from a bad dream, and one more year far, far away from cancer. One childhood friend once referred to her cancer experience as a blur. My life before cancer often seems like a blur. I often find these people seem to define a cancerversary in terms of good health. Photos and comments concerning cancerversaries are happy.
Cancerversaries mean something different in the metastatic community. Degrees of health vary. Some see improvements from year to year. Some are stable. Some notice declines. The following year is a hope but never a certainty. There is joy in seeing another year. Understandably, there is sadness because so much has been endured and the future is a big question mark. Happiness still exists, but it is different. Perhaps I can explain the difference of seeing someone else play with a puppy and being able to play and snuggle with a puppy yourself. A photo of a puppy is different from one in your arms that’s napping or licking your face. We can all love puppies but have different experiences with them. Levels of joy with cancerversaries for those with metastatic cancer are different.
I represent only one view, my own. One thing I learned along the way is that everyone brings their individual experience. Everyone’s opinion has value. When I hear the word cancerversary, I think of wedding anniversaries. Wedding anniversaries are happy days for married couples.
Not all anniversaries are celebrated. Some are endured like those that mark a diagnosis, a divorce, a death. We mark the bombing of Pearl Harbor and observe the terrorist attack on 9/11. COVID death benchmarks are marked with a heavy sadness. Flags are lowered. These dates show there are events attached to the word anniversary with tragic loss of life. Perhaps the word cancerversary isn’t so out of place. I’ve accepted this term as I’ve evolved to a place where I’m not going to spend energy arguing over a word. I am fine with whatever term others want to use. You can’t tell someone else how to feel and there are feelings attached to the words we choose.
I’ve called them survivorversaries since I was diagnosed. The word survivor has different interpretations in the metastatic community as well. It works for me. In the same vein that a wedding date is celebrated, I can get more behind honoring my surviving another year. I won’t celebrate cancer which is a big part of why the word cancerversary rubs me the wrong way. I’d like there to be a couple moments where I can focus on the fact that I’ve stayed alive up till now and not have the cancer word slip in uninvited. I acknowledge the day. I do share with others that I’m past the median 2-3 year expectation and well past the dismally low 5 year survival statistic (28%). But it’s tough when most people I know who were diagnosed after I was have already died. Survivor guilt can be heavy to carry. I look to people who are still around and living well at ten, fifteen, and twenty plus years with metastatic disease. Since I’m examining words, the word unicorn has been used to refer to these people. It is similar to an outlier and pretty spot on for what it represents.
Still, when that looming date arrives once a year, I do something special for myself, feel a sense of achievement, and march onward to the next big date. I may light a candle. It’s a good day for reflective writing. It’s a good day for a treat or a good workout. I’ve been lucky enough to see my first robins of the spring return on my survivorversary.
The term Diagnosis Day is growing on me a lot. It’s factual. It doesn’t feel like it needs to be celebrated or grieved. There isn’t a prior association to an anniversary. It’s just there. Its meaning is clear without explanation. It’s not a mouthful like survivorversary. I’m going to start using Diagnosis Day more and more. My Diagnosis Day is March 14th.
The word survivor rubs many the wrong way. I don’t mind this one as much. The issue with this word seems to be metastatic people are included in survivor language to a point until we aren’t welcomed in a conversation, group, or study because of our status. The second I was diagnosed I became a survivor. When I’m no longer surviving, I’m no longer a survivor. One size does not fit all. Others prefer words like thriver, endurer, haver, metser, or refuse to be labeled at all. I haven’t really found a term I feel suits me. I just want to be me and not always the person with cancer. It’s hard to escape from since I go everywhere I am. Go figure.
I commented recently a new word was needed to replace thriver and now I think better of it. A new label is the last thing we need. I think thriver may have started out with positive connotations because it differentiated from survivor in a way that was meant to be a compliment. Thriving means something is flourishing or prospering. Surviving, thriving, striving, etc. all have positive enough meanings that sour when attached to cancer. Not everyone feels they are flourishing who lives with metastatic disease. It doesn’t take long for a word associated with cancer to take on negativity. Cancer takes perfectly good words and ruins them. Look at the word pink. It’s a perfectly good word until used in conjunction with breast cancer. Then it becomes a debated and sometimes hated word and color.
Battle and Fight
Battle imagery bothers me. Again, it probably started out as a way to honor or pay tribute to someone who had died much as we would honor a fallen soldier. The problem is most people who die of cancer aren’t soldiers. I know there are some. Saying someone lost their battle or fight to cancer is disrespectful. There is not a winner and loser. When someone dies who has cancer, so does the cancer.
Isolating the word fight itself somehow doesn’t annoy me as much. It’s used in many different contexts. Siblings fight. Football teams fight for an inch of yardage. We fight (stand up) for those who can’t fight for themselves or for core beliefs. Politicians fight. A lot. You bet I’m fighting to stay alive. I’m certainly not resigned to whatever fate falls to me. I fight in some of the typical ways, but I also fight with hope and joy. I fight with knowledge, science, and research. That gets hard to explain to others because you don’t throw a punch of hope or pummel joy. Just as people get to choose what they’d like to be called, we can choose how we fight.
What works instead of battle or fight when someone dies? Just say died like you would when others die. If the person is still living, then say they are living with cancer rather than battling or fighting cancer. I’m living. The name of my blog is Finding A Way – Living with Cancer and Living Well – not Fighting Cancer and Fighting Well. I can’t even imagine it.
Journey is the word I find most annoying. Sometimes I wonder if smoke doesn’t fire out of my ears when I hear someone talk about their cancer journey or refer to my journey. Cancer isn’t a vacation, adventure, trip, odyssey, or journey. My former oncologist referred to unpleasant developments as new territory. I often replied I was staying put in my own territory and he needed to get himself back to where I was. The only travel motif that even slightly works is passage. Passage can be part of a path or journey (groan). That would mean cancer is a way to move from one place to another. It’s more of a transition. What that transition means is different for everyone. I feel I’m in constant transition. A state of transition can be either fluid or final.
If stumped for a word, just say cancer is part of someone’s life. Nothing else really works because of all the negative association. It isn’t a chapter, an act, inning, quarter, course, gift, or any other metaphor to mask someone has a scary, awful, life-threatening disease. It certainly isn’t a journey. A dream vacation to Tahiti is a journey worth taking. Weekly trips for cancer treatment are not the same. The weekly trips are highly worthwhile because I like breathing, but I’d love to wake in an overwater bungalow and swim in warm turquoise waters. Cancer is a part of my life.
Abigail Johnston (who writes No Half Measures) has used the word experience instead of journey. A cancer experience is to the point and its meaning can cover a wide spectrum of experiences whether they are good or bad. I referred to my friend’s time with cancer as an experience earlier in this post. Experience is a word being used by many these days. Cancer experience is going to find its way into my vocabulary more and more in the same way as Diagnosis Day. My opinion is these are better words.
Words carry a lot of power. I don’t think I’m going to change anyone’s mind about their personal preference. What I can do is communicate what words I prefer and use them on my Diagnosis Day and all the days I am living with cancer.
Are there words in the cancer world you wish would disappear? Hopefully, one day the word cancer itself can disappear.
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.
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.
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.
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.
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.
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 on 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.
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.