Attempt #1 didn’t get very far because a port couldn’t be installed again on my right side. My surgeon tried several times but the needed vein on that side had narrowed too much for a catheter to be inserted.
Attempt #2 was that same day. I was handed over to a different surgeon and went through surgery number 2. A port was successfully installed on the left side. I felt quite energetic after both of these.
However, it didn’t work. Somehow it flipped medially and was facing my sternum. The veins in my arms took a beating for a couple months. It took a long time, too long, to get the next attempt scheduled.
Attempt #3 was successful. A larger port was installed about a month after attempts one and two. It’s staying in its pocket and not going anywhere. I can feel the bumps in my chest used as a guide to center the access needle. It was easy to access and is working as expected. This one is a keeper.
The whole experience reminds me of the movie Groundhog Day. I don’t remember how Bill Murray broke the cycle, but I hope I finally have. In one version my pre-op and post-op rooms were different rooms on the 4th floor of the hospital. This last (and final) time I had a private room with a view of the capitol on the 10th floor. I had the same surgeon for the last two – the same anesthesiologist for all three. Each surgery version seemed slightly different before I dozed off. I got a bit closer to what I needed each time.
This all took about two months. From an emotional level, it was exhausting. Having any surgery would do that, but to keep having the same surgery over and over is annoying. Thank goodness it was minor.
If you missed the port drama and would like to read more, you can do that here.
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.
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.
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 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.