Oncologists and Hospitals

Almost two years have passed since my oncologist moved away and I moved to the main cancer center at the hospital to start seeing someone new. I’ve adjusted and can see the advantages of making this change.

Advantage #1

My new oncologist is now my oncologist. She is highly regarded in her field for her knowledge and expertise. She ticked off many boxes on my checklist. I found her hard to read at first. Honestly, I still do, but I feel I’m getting through more successfully and more often. I see where she has made an effort to get to know me. Personal connections make my health care better. We can work well together.

She’s saved my life once so far. I take some of the credit for suggesting there might be an issue with the port or a possible infection. She hopped onto both. More was unraveled before it was put back together. The blood infection could have been much worse. I am lucky and grateful to have her on my side. Someone saving your life is an enormous advantage. Hence, she is awesome in my book and I’ll always be grateful to her.

Advantage #2

I feel more at home now compared to my early visits. I should because I spend a lot of time there and it’s one of the only places I go. In many sad ways, it’s like a second home. It has taken time to feel this way. Navigating from one part of the hospital to another has gotten easier. Bigger places feel smaller when you know your way around and only frequent certain areas. I am more familiar with the ways of operating and the hoops that need to be jumped through to get what I need. It’s amazing how many people I run into that I know when different hats of patient, advocate, and occasional troublemaker overlap. I enjoy the rotating art featured on the walls of the main entrance. I have gotten to know a handful of nurses and that makes my visits easier as I don’t feel quite so alone. We talk about our lives. They have made me feel like a person.

Advantage #3

This setting has more access to the cold cap machines. UW Carbone has two. I wasn’t sure if my former clinic setting had a cold cap machine because I didn’t need one at that point. I’ve since learned they have one. The one time I was scheduled there to use it, it was broken. The staff was as kind as ever, but they didn’t realize it needed servicing until I arrived. I waited 90 minutes for one to be delivered four miles. I had a headache and felt sick before treatment even started. This new memory has tarnished my experiences there and I won’t return again. Sometimes smaller settings don’t get things if a larger setting is nearby. For example, there was a time when chemotherapy and other infusions were not made in house at the smaller location. These arrived throughout the day by courier. Having access to overlapping needs in one location is an advantage for patients.

Advantage #4

Pharmacists come talk to me while I’m getting treatment. It’s a perk to the COVID-19 life, but I like the more personalized service and opportunity to talk a bit more about side effects and get multiple questions answered. Delivery service is one less stop for me and that’s fantastic after I’ve spent hours there and I’m ready to go home. I even have an oncological pharmacist I can myChart with questions about medications and side effects. She has phoned me to talk in depth about a new medication I started for neuropathy.

Advantage #5

Bucky Badger visited the treatment area long before COVID-19 came to the country. That’s a definite perk to a treatment center at UW Hospital.

Advantage #6

It’s a few miles closer than the center on the other side of campus. I don’t have to deal with students ignoring traffic lights if I happen to be driving through as classes are switching.

A Handful of Disadvantages

There is always room for improvement. Scheduling can still be a frustration. There are some impersonal aspects where I don’t feel fully seen or heard. My days there are plenty hard. Something usually pops up that’s unexpected. Yet, I see shifts in some of my original perspectives from when I switched care settings. A part of me still would prefer how everything used to be, but that isn’t an option anymore. I work hard to make the best of things and know saying what I need and what works or doesn’t work is a part of my plan.

I read on social media that my oncologist has been named the Department of Medicines interim Division Chief for Hematology, Medical Oncology, and Palliative Medicine. I am not sure what that means for me. Is it an advantage or disadvantage? A trusted medical friend has told me many doctors do both clinical and administrative work. My oncologist already serves in numerous leadership roles. One reason my former oncologist recommended her for me was she was not as heavily involved in admin as another doctor high on my list. Will she still have time for me? I asked directly and she said she cut back in other areas to maintain her patient schedule. Another oncologist has now left and a new one hasn’t been hired yet. This means the remaining oncologists have to absorb her patient load which means there is less opportunity for me to see her.

As a teacher, we were “encouraged” (no choice given) to be involved with numerous committees in addition to teaching. Curriculum development, wellness planning, positive behavior interventions, and collaboration groups were just a few of these groups. Yes, they are important, but they also became a series of hoops to jump through to prove our worth as teachers when our year popped up during teacher evaluation cycles. I always thought that the actual teaching was meant to reflect our teaching strengths. Go figure. It was also a way to get more work out of us. At times this work definitely felt like it fell outside our job description. I wonder if this same kind of talent stretching goes on in medicine. Is my oncologist involved in these multiple areas because she is genuinely interested and an excellent fit for them? Or are there other reasons that pull away from patient care? Teachers, doctors, anyone in any profession can be stretched too thin. It is a disadvantage when that happens.

Nothing is perfect. My main concern always is how my care will be impacted. I am watching and always evaluating. I make an effort to look at situations objectively but can’t dismiss subjective circumstances. What affects me may affect someone else. It so often seems that I’m thrown off course when I finally get used to something. Change is constant. There was a time I rejected coming to the hospital for treatment. It was the last place I wanted to go. Now, it’s a home away from home.

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.