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.

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.

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.

My Most Protective Option

Choosing my most protective option has lately become a repeated refrain for me. I find myself comparing choices as I deal with a smaller world for myself and what I am able to do with limited options available to me.

In a school setting, teachers always followed the principle of providing the least restrictive environment for students with special needs. I came back to that idea time after time in work with special education teachers and instruction for students. I want the same type of tried and true standard for the circumstances I now find myself in as I shelter at home. The least restrictive environment would do nothing for me. Heck, the least restrictive environment would place me out and about without a mask in large crowds with strangers. What I needed was the exact opposite of the least restrictive environment. The most protective option fit perfectly. It fits every decision I’ve needed to make so far.

Medical

Being in the same room with my oncologist is preferred. I have been open to visits over the phone and video style because it mainly seems I have little choice. I could hopefully see her if I needed some type of physical interaction. If I’m choosing the most protective option, I must go with a remote visit. I may feel differently after a few months. Telephone and video have limitations. Eventually, the most protective option may be to see her in person as it may yield results that you can’t get without contact. Meeting face to face could eventually be more protective as circumstances vary.

My treatments have continued as scheduled. An army of gatekeepers and temperature takers await me at the uncrowded hospital entrance. Hallways are unnaturally empty. No one waits in waiting rooms and people are sent to their treatment bays immediately. I wait there alone. The nursing staff is cheerful even though they wear masks and protective face shields. I was not happy with the answers I received about how many days (yes, days) they were asked to wear the same surgical mask before getting a new one. That is most definitely not the most protective option for them even with a face shield. Protecting myself involves that those I have contact with are also protected. I do not want to be overly critical. I do want everyone to stay safe. I’ll follow up with a few more questions at my next visit.

Groceries

Getting groceries has evolved into quite a process. March 13th is the date I started social distancing and staying at home. Wisconsin’s Safer at Home order took effect on March 25th.  I could still shop during the first hour of business assigned as a courtesy time for the elderly and those with underlying conditions if that was my only option. It would still put me in a public setting. My other options are delivery or curbside pickup. I haven’t been able to nab a delivery time. Instead, I focus on getting a curbside pickup timeslot every two weeks. Slots open up online one week in advance at midnight. They are gone within minutes. I am sleeping and hopefully lost to my dreams at midnight, except when I need to reserve a grocery time. One night after I reserved a spot, I noticed all the available times were gone within ten minutes. It has gotten even more competitive since then. Last week they vanished within three minutes. Three! I am not sure exactly how many are offered each day, but the demand is much higher than the supply. I am thankful I got one and that for now I have figured out what I need to do in order to get what I need. Things change quickly. I just learned the window opens up at 1 PM rather than midnight. Time will tell if that switch makes ordering even more competitive.

I admit it also makes me sad that grocery shopping strikes me as a cut-throat world. My oncologist advised me to take this route as a way to keep myself and others I may come in contact with (like her) healthy. This is something I can do for me and for her. I feel some guilt in taking a spot that is in such high demand. I can stretch items and plan menus so I am more than comfortable shopping every two weeks rather than shop every week. At the same time, I need this service as much as someone else, so I must do what keeps me safest. It’s my most protective option. I will choose it every time.

Reserving a time involves multiple steps. Getting the groceries into my home adds several more. Items come out of boxes (cereal, protein bars, yogurt) so I don’t need to bring boxes into my home. Plastic items get wiped down with Clorox. Blueberries, blackberries, and other small fruit are taken out of their plastic containers and put into glass containers. I dunk foods in soapy water and rinse them. There is a sanitized and not sanitized half of my counter as I unload items. My groceries have never been cleaner. It’s exhausting and insane. Right now, it’s what I do thanks to a viral YouTube video.

Hair

When my hair grew back in 2013, I was done with coloring it. It could be natural. I was firm about it. I had to staunchly defend my choice to one or two who couldn’t understand it even though it had nothing to do with them. There’s always a critic. My hair was beautiful. A silver curl framed my face in a striking spiral. When it grew back in 2019, it was a lot grayer than before. I felt so old and felt I looked washed out. My wig was a much younger look and I liked what it did for me. I chose to get on board with coloring again and that was that. I certainly never thought a situation would unfold that would prevent me from getting my hair done. I have hair. I have quite a lot of hair. It is ironic that I can’t get it done or go anywhere. Who knows where I’ll be on the cancer road when stay at home lifestyles finally are no longer necessary.

I took matters into my own hands and colored my hair on my own. I ordered some that was free of parabens, sulfates, phthalates, and ammonia. It didn’t sound like it was too hard. The directions were straight forward enough. The company had videos to watch. What could go wrong? The only places I go are to my oncology appointments and to pick up my grocery order. No one sees me so now was as good of a time as ever to try something new. Chalk it up to a massive need to feel in control, but there is a bit more to it. I wanted to feel good about my appearance. Perhaps that sounds vain. Having hair that looks decent goes a long way for this metastatic breast cancer patient who wore a wig for three years. I want to keep my hair and I want it to look good, even if no one sees me. I see me.

Inconveniences vs. Problems

Rabbi Steve Leder appeared on TODAY with Hoda & Jenna earlier in April. He offered excellent advice on perspective and encouraged people to distinguish between inconveniences and problems. Not being able to go to a restaurant is an inconvenience. Having bad hair truly is an inconvenience. It sucks but it doesn’t make it less true. Not being able to breathe and needing a ventilator is a problem. Not having any food or a means of getting food is a problem. I need to remind myself that what I am experiencing personally through this so far have been inconveniences. I may shed a few tears as a way to deal with my feelings, but my issues remain identified as inconveniences, not problems. You can listen to the brief interview here.

Choosing my most protective options will continue to guide me in the days ahead. It offers a solid way for me to evaluate choices and make consistent decisions. It removes my feelings and provides me an objective format. Hopefully, it will make tougher decisions much easier because the safe choice is usually an obvious choice.

It won’t help me figure out if I should bake chocolate chip cookies or brownies. This isn’t an inconvenience or problem. Neither option is more protective than the other. Perhaps my litmus test doesn’t hold up in this situation.

Luckily, I know what I must do.

Cancer Research Lab Tour

I had the opportunity last week to tour the Burkard Lab for Breast Cancer Research at the UW Carbone Cancer Center. Dr. Mark Burkard is one of the oncologists there. In addition to seeing patients with breast cancer, his research interest is in targeted therapies, especially those directed at protein kinases. He also heads up the Outlier Study in addition to work in clinical trials. It’s his lab that I toured.

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Burkard Lab for Breast Cancer Research, UW Carbone

My working knowledge of cancer started when my mother was first diagnosed with primary breast cancer. I learned a lot more years later when hers became metastatic and with my initial diagnosis of metastatic breast cancer in 2012. A period of time exists between then and now where lots of information has blurred. Science never was my strongest subject. I’ll do my best to summarize what I understood from the evening’s tour. Beware of technical difficulties.

The lab tour was guided by graduate students and research team members through several stations in the lab much like learning stations would be set up in a classroom. The structure lent itself well to guiding a group of people through areas in smaller groups to provide a more personal experience. Snapshot descriptions of each station follow.

Cell Division Station

The first station was led by graduate student Roshan Xavier Norman. He explained how erroneous cell division can cause lagging chromosomes that form a micronucleus. This micronucleus doesn’t have all the material it’s supposed to have. It can lead to cancer if a cell doesn’t have the same nucleus material as the others. His work involves staining proteins in cells and looking at them through expansion microscopy. This enables him to see molecular structures at high resolution and see the difference between normal cells and abnormal cancer cells. He talked at length about chromosome segregation, spindle abnormalities, and differences in cells from mitosis that were damaged because of lagging chromosomes during DNA replication. It became very technical for me to understand, but the gist I took away was he was being successful in pinpointing these errors in cell division and there are applications to research.

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Expansion micCell Division in Various Stages

Outliers Study Station

Rob Lera, PhD, is a research associate and has been with the Burkard Research Group since 2009. He talked about the Extreme Long Term Survivor Study. The goal of this study is to identify patterns that attribute to long term survival in metastatic breast cancer patients. This study is also known as the Outliers Study because despite the odds, there are metastatic breast cancer patients living well beyond the expected two to three years median survival rate when diagnosed. There are two survivors still going strong by surviving greater than forty years, one of whom was on the tour that night! I felt like I needed to go and rub up against her for luck. Fifty of the longest survivors since their original primary diagnosis have been surviving from 22-42 years.

Data on participants in this study are gathered through extensive paper/online questionnaires, phone interviews, saliva kits, and extracting tissue samples. Most participants are HR+ Her2 – but there is representation from all MBC subtypes. Then it is all analyzed for patterns.

Preliminary results can be found HERE.

It appears the only conclusion drawn so far is there is no apparent correlation between exercise and time living with cancer or metastatic breast cancer. Cancer is so individualized. My personal opinion is that the 720 participants in the study surely must have done things outside the medical box and thrown some of the medical advice out the window to still be around today. I need to think outliers didn’t get where they are from playing by all the rules. It sure would suck if there were no correlations at all and extreme long term survival amounts to pure luck.

I was discussing some of the possible factors determining survival with one of my friends on the tour who has a nursing background and we unscientifically agreed that if an individual thought something made a difference, then it made a difference. I happen to believe the daily exercise I do now makes a difference in my health. I exercise daily and get my 150 minutes each week, usually more. Feeling like I’m doing something positive in terms of my health matters to me. Belief is a powerful medicine. It is one of many attributes and patterns that can’t be measured through this study.

I filled out a preliminary survey for the Outliers Study and felt I provided lots of information on why I feel I’ve survived so far. I am one of the little lines on one of their charts. I haven’t survived long enough to be interesting enough for further study. Someday I will be.

Patient Derived Organoids

Rachel Sundstrom is a research specialist with a degree that’s focused on biochemistry, cellular and molecular biology. Her work involves analyzing patient derived organoids (PDOs). PDOs are cancer cells from patients with breast cancer tumors that are grown in a 3D model. They mimic the biological characteristics of the primary tumors. I think this is what she meant when she talked about organoid morphology and how she is working with different Taxol concentrations that cause cell death, trying to find the just right level for that to happen.

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I had the opportunity to look through the microscope at a sample PDO.

All this work is worthwhile. I spoke to another friend the day before this tour and she told me about experiments where cancer cells were taken from a patient’s body, grown in separate petri dishes, and then various chemotherapies and targeted therapies were tested out to see which treatments the cancer responded to best. I asked if this type of work was being done at Carbone. No, it isn’t. Well, I responded that’s the direction I felt research needed to take. She said some work similar to what I had asked about is being done at the colon cancer lab on campus headed by Dr. Dustin Deming. I have met Dr. Deming and heard him speak about his work with colon cancer treatments. He told me there are some crossovers that may be applicable to breast cancer. Anyway, I made it clear I wanted that kind of work to happen at this lab. Why wasn’t it being done?

It’s expensive.

My response: Yes, research is expensive. People die. That has a cost, too.

I hope my comments were heard and get discussed further elsewhere in the context of future projects being planned. I know a handful of people on the tour that evening had metastatic breast cancer. We were there because of our health and want to live. We support research being done. We want to be outliers. I was not there just to learn and pat them on the back. I want to drive change.

It seemed like the perfect opportunity to communicate, “Is this being done? I would like this to happen here. When will it happen?”

I felt a little like it was the elephant in the room.

I wondered if I was the only one seeing it.

Immune Response Station

Yang Hu presented his graduate work on the effects of Taxol on activating an immune response to cancer cells. T cells are a type of white blood cell that are important to the immune system. They are important because they can adapt and tailor a response to specific pathogens. These cells are often likened to soldiers that target and destroy bad cells. The challenge is to get these T cells near enough to the cancer cells in order to kill them off. His work is showing that paclitaxel/Taxol can stimulate T cell immune responses for some people. His sample size is small, however, there may be a small pattern emerging where triple negative breast cancer (TNBC) patients have responded more to this type of treatment than other breast cancer subtypes.

I would like to know what goes into the process of determining which projects get accepted and researched. The lab was interesting to see. In my mind I pictured it as being very spacious and sterile, filled with high tech equipment, cold, and lots of white. People would walk around wearing lab coats, goggles, and gloves. That’s how TV and movies depict research labs. It wasn’t at all like those images. Every nook and cranny was used. It was crowded with color. I was reminded of how I used space in my old classroom.

I am grateful that these researchers are using their time and talents to dedicate their lives to breast cancer research. Teaching hospitals often have tours of research facilities as it’s one way to promote their work and thank donors who’ve helped make that work possible. My suggestion is it’s well worth your time to find one to tour, learn about what’s being researched, and ask the questions that matter to you. Do some research!

End of a Decade

 

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Image credit: pixabay.com

December not only ends another year but it will finish a decade.

2020 is days away.

What has made history since 2010?

A lot. The world is a big place and I will leave out many events. My perspective is primarily through the lens of someone living in the United States. There have been cataclysmic forces of nature that ended lives. Gun violence has become common and largely ignored. I’ve included advancements in technology that have changed our lives for better or worse. Many events happened that aren’t mentioned here. The following is a mere sampling.

The decade got off to a horrific start. Haiti was devastated by a magnitude 7.0 earthquake on January 12, 2010. It left more than 316,000 dead or missing, over 300,000 injured, and over 1.3 million homeless.

The first iPad came out in April of 2010.

On April 29, 2011, over 22 million viewers watched Prince William marry Kate Middleton.

Many viral challenges came and went in the past decade. The Ice Bucket Challenge raised over $115 million for ALS awareness and research during the summer of 2014.

The world argued over whether a dress was black and blue or white and gold in 2015.

Apple also released racially diverse emojis in 2015.

The Supreme Court ruled that gay marriage was legal on June 26, 2015.

The largest single-day demonstration in U.S. history took place on January 20, 2017, to support gender equality, civil rights, and other issues that affect women. It was called the Women’s March and drew over 5 million people in over 600 marches across the world. Reportedly, around 500,000 people were in attendance at the Washington March.

On September 20, 2017, Hurricane Maria struck Puerto Rico. The Category 5 hurricane caused a major humanitarian crisis to Puerto Rico’s 3.4 million residents.

A total solar eclipse was visible across the U.S. in August of 2017. Another one won’t be visible until 2024.

The most diverse class of lawmakers in history was sworn into Congress in January of 2019.

Astronomers captured the first image of a black hole on April 10, 2019.

Donald J. Trump became the 3rd U.S. president to be impeached on December 18, 2019.

What has the last decade been like for me personally?

I sold my condo and moved into a beautiful home in 2010.

I planned to become an adoptive parent. Cancer had other plans.

I was diagnosed with metastatic breast cancer in the spring of 2012.

My mother died from MBC in April of 2013.

I taught for the first six years of the decade which I found blissful, purposeful, and frustrating. I went on medical leave from my job in the fall of 2016 and officially retired from a teaching career in June of 2018.

I started this blog on August 25, 2018.

Cancer sucks and it has consumed far too much of the decade and taken far too much of me. But I’m still here.

It’s easy to say fuck cancer and that the last decade sucked. I do say it. Things often undeniably suck in a very fuckful fuckable fuckety way.

A Triple F if you will.

It’s harder to embrace all the goodness and joy that abounds when you are living with a deadly disease. Amazingly, I have felt profound joy and happiness when I have been filled with feelings of love and something divine out in nature. I have basked in the warmth of time spent with dear friends. I have been inspired by encouragement and support from my family, friends, and strangers. I have been filled with prolonged moments of peace.

This decade has been harder for me than I ever could have known. I will move forward into 2020 with the intention to continue living in love, hope, and light.

What advances have there been for treating cancer over the last ten years?

I became overwhelmed trying to sort through information. Many drugs that have been approved for one kind of cancer have also been effective in treating a different kind. There are different approval dates based on different indications. Some drugs work well in conjunction with one another but didn’t start out that way. Some drugs have different FDA approval dates based on changes in dosing. Fulvestrant is one of these – it’s been around a long time but receiving a high dose (fulvestrant HD) when first receiving this drug makes an old drug better. This change has been approved within the past couple of years. New combinations are being tested in trials every day. I can’t do justice to all the approved breast cancer drugs in one post. I encourage those interested in learning more to visit the National Cancer Institute and Food and Drug Administration to conduct your own searches.

As I nosed around on FDA.gov, it looked like there have been over 20 approved drugs for treating cancers in 2019 alone. I don’t know how many of these are applicable to specific breast cancer or metastatic breast cancer settings. It was part of my feeling overwhelmed.

Back to the last decade and the development of drugs to treat breast cancer.

I begin with these caveats:

  • Information provided is true to the best of my knowledge.
  • The first known FDA approval date is given unless otherwise noted.
  • Drug names are listed first followed by brand names.
  • Keep in mind, this is not a complete list.

Just for fun, here are a few drugs from the 90s that are still widely used today:

  • anastrolzole/Arimidex  1995
  • letrozole/Femara  1997
  • trastuzumab/Herceptin  1998
  • capecitabine/Xeloda  1998
  • exemestane/Aromasin  1999

Early 2000s:

  • fulvestrant/Faslodex  2002
  • lapatinib/Tykerb  2007
  • everolimus/Afinitor  2009 (2012 for MBC)

And finally, here is a snapshot of what the last decade has seen in FDA approved drugs for treating breast cancer:

  • eribulin/Halaven November 2010
  • capecitabine/Xeloda September 2013
  • gemcitabine/Gemzar (2004) with carboplatin  2015
  • palbociclib/IBRANCE  2015
  • neratinib July  2017
  • abemaciclib/Verzenio  September  2017
  • trastuzumab and pertuzumab December  2017
  • alpelisib/PIQRAY  May 24, 2019
  • trastuzumab deruxtecan / Enhertu is the newest drug available to treat metastatic breast cancer with FDA approval as of December 20, 2019. Read about this latest advancement here.

Tucatinib also is showing a lot of promise for those with metastatic breast cancer. From what I’ve read or heard, this is still in trial status. If my science friend Pauline is reading this and would like to drop some science on us, please comment below and share in language we understand and can take to our oncologists.

I started my cancer life on a regimen of doxorubicin /Adriamycin (approved in 1974) Cytoxan (approved in 1959) followed by paclitaxel /Taxol (approved in 1994).

No new drugs were approved between 1974 and 1994. How is that true?

As I look at the lists of drugs above it seems abundantly clear I would not still be here without the advancements of the last decade. So many targeted therapies have emerged and many more are in the future. Research is responsible for these advancements. I have been on many of the drugs listed above. I need more options that will specifically target mutated cancer cells in my body. I believe in research happening at UW Carbone.

My medical background is that of a patient. Gone are the days when I say I don’t have a medical background because I have had quite an education. I don’t have a degree, but I have a background. Unfortunately, the past decade has schooled me through first-hand experience. I bring that knowledge to the table and to each office visit. I plan to keep bringing it.

And I will find a way to bring it wherever I find myself in 2020.

Happy New Year.

Patient Rights and Raising the Bar

An oncologist, radiologist, and surgeon all walk into a bar. Each was feeling frustrated because each felt he was more responsible than the other in successfully eradicating a patient’s cancer. In the midst of their heated discussion, a nearby bar stool swiveled to reveal the very patient they were debating (it was a juice bar). “You all have been a vital part in my healing, but I AM the most important factor in healing my cancer.” Each doctor was struck speechless, whereupon the patient treated each to a nutrient and antioxidant rich green smoothie.

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I’m feeling fired up today about many, many things related to health care.

Do you realize how empowered you are? YOU are the common factor that ties your specialists together. Good communication is key. Sure, they discuss your care without you, but you get to integrate that information together. It needs to make sense to you. It affects you the most. YOU are the one who has sought out complementary treatments and again the person fitting all these pieces of your health puzzle together. YOU have done the research and made informed decisions. They all work for you and your interests. YOU are the CEO of your team. That’s powerful.

A lot is being done TO you. You may feel out of control. You have rights. Knowing your rights is empowering.

  • Having complete and accurate information from your doctor about your diagnosis, treatment, and prognosis tops the list.
  • As a patient, you are entitled to privacy regarding your medical care and records.
  • You have the right to quality care and treatment consistent with available resources and standards of treatment.
  • You have a right to refuse treatment and be informed about the consequences of that decision.
  • You have the right to care and treatment in a safe environment.
  • Another big right is that you have the right to considerate and respectful care.

I want to add two additional patient rights.

One: The right to demand more research and more effective treatments for advance stage cancer.

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Image credit: pixabay.com

It seems to be an idea I keep repeating over and over. Tell your oncologist, radiologist, and surgeon. Make phone calls and write letters to administrators of treatment centers and hospitals. Find a researcher who would love to give you a tour of their lab and share what is being worked on.

I think this is a great way to create a direct line to the front line.

It also provides a face to the work the researchers do, even though I think many researchers went into their chosen profession because of loved ones who’ve been lost to illness. Every new face can continue to motivate researchers.

Touring a research lab certainly will better my understanding of work being done. It’s on my list of things to do. Spread the word to non-medical people (family, friends, coworkers, followers, etc.) so they can spread the word on the urgent need for more research for advance cancer. When more people speak up and demand more, and keep demanding more, there is a better chance that people will get more. I ask for more all the time.

Two: The right to have more equality and power with pharmaceutical and drug companies.

I feel this is an uphill battle but one worth having because those needing drugs are humans with feelings and deserve whatever can help them feel better. This one relates a lot to the aforementioned right to CONSIDERATE and RESPECTFUL CARE. It is neither when you are treated like you don’t matter or are insignificant. THEY are there for ME, not the other way around. Too often the latter is the norm. I could easily throw insurance companies to the mix.

I am tired of feeling exhausted with efforts to make a positive difference, but I will keep working to do so for myself and for others. I am so sick of arguing and jumping through hoops for what I deserve in order to be well. I have mentioned this point in earlier posts: I’m well enough to argue for myself and hoop jump, but what about the patients who are physically too tired or weak to do so? Those who are sick are vulnerable just like any other powerless or marginalized segment of society. Take your pick – there are plenty of “others” in society. They are discounted. Laws and policies do not work in their favor.

Here’s more depressing news – the cancer the specialists argued about eradicating in the beginning of the post may not have been eradicated. It should be part of the complete and accurate information you get from a doctor about a cancer diagnosis and prognosis. 30% of cases recur or may metastasize. Unfortunately, it could still be lurking, biding its time. A new cancer can also grow. You, being extremely empowered, need to know this is a possibility. You, being extremely empowered, need to stay vigilant in understanding your risks and the red flags that may suggest secondary cancer. I apologize in advance if the following freaks people out. It freaks me out, too, but I feel it needs to be shared. Jo Taylor is the founder of After Breast Cancer Diagnosis and a patient advocate living with secondary breast cancer. She can be found on Twitter @abcdiagnosis and her website is abcdiagnosis.co.uk.  The graphic below (used with permission) illustrates warning signs that should be on everyone’s radar.

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Years ago, I felt a little tired but just chalked it up to the demands of my job. A lot was going on personally for me as well. These things could very well have been why I felt tired. Many people are fatigued who do not have cancer. Cancer was the farthest thought from my mind. I have no idea of knowing for sure.

Although the above symptoms pointing to a reality (or possible reality) for some is depressing or upsetting, knowledge is power.

Let’s talk about the term healing. Semantics can be tricky. Healed cancer, treatable cancer, cured cancer. Can you be healed without being cured? I think the answer is yes. Healed is more of an element of mind and spirit. Healed and cured are probably the most synonymous. You can be healed and still have treatable cancer. You can be healed and have curable cancer. You can be cured, but not healed. And you can not be healed while having treatable cancer. I still hold fast to the idea that you are the most important factor in your healing as you have to decide what you are going to allow and how it works for you.

It’s time to get back to the doctors who walk into the bar. They may continue to argue. They may nod politely at your declaration. Perhaps they believe you. When you assert that you are the most important factor in your healing, you raise the bar of expectation in doctor-patient relationships. You change how you are perceived. You may even change the treatments offered to you. Maybe you find something that is a possibility for you that your doctor hadn’t considered. You are important. You matter. Your voice matters. The bar is important.

A patient, researcher, and leader all walk into a bar. Here’s the punch line: They are all the same person . . . you. Being an active member on your cancer care team ensures that no aspect of your care is taken for granted. Your team is accountable to you, as it should be. And here’s even more good news: The oncologist, radiologist, and surgeon have been waiting for you. They wave and welcome you to your seat at the table.

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Image credit: pixabay.com

Consider responding:

  • How do you feel you are a part of your team for your health?
  • Are there any other rights you’d like to add to your personal list of patient rights?

 

Thoughts on Oncology

Doctors’ roles are essential in healing.

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They should not be minimized or discounted. Cancer research will someday find a cure for what has affected us personally and our families. I am in awe for the dedication and care I have received. Traditional western medicine is only one route to choose. I know many who have stuck to this road with little question if something additional should also be done. Maybe they didn’t need or desire anything different. Maybe they didn’t know they could ask for anything else. Cancer was a six-month detour that blurred more with every passing year. It became part of their past.

However, if you only drive down Main Street, you only experience one part of a town. Side roads and rural areas are well worth the ride. They offer something different. You don’t have to travel only one or the other. My opinion is both are necessary to live well and/or be cancer free. You are the patient and in control over decisions that affect you. My healing plan consists of many side roads and rural areas that have made a positive difference for me. I am the common factor and pull it all together.

It has been so much more than a six-month detour for me. Parts still have blurred. I have traveled on many roads to get where I am today.

It seems strange that I haven’t blogged much about chemotherapy or my oncology appointments. Chemotherapy has been a focal point for far too long. It sucks energy and manifests more physical symptoms than I care to list. It sustains life while it kills cells. Chemo is reassuring and comforting in its own way. It ranks high as a huge part of my healing plan. I have hit my 100th treatment. That’s pretty significant. It isn’t a celebration, but I am checking off the box and moving on. I am still here.

There are so many other aspects in addition to active treatment that I think are also important to an integrated approach to a cancer healing plan.

A strong doctor-patient relationship is vital for my living as healthy as possible.

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The relationship I have with my oncologist is a really good one. He deserves credit for sticking with me, listening to me, and working for what I want. He knows how I feel. Yes, I’d love to be someone who visits her oncologist once a year, and eventually less than that, but it’s not the kind of survivor I am. I’m getting active treatment. I go to my doctor a lot. Sometimes it means I may be a pain in the butt. I do get all my questions answered. I even come up with some good ideas from time to time. The good news is my oncologist doesn’t have a chance to forget about me. If I don’t speak up for me, who will? I am my own best advocate.

Oncologists differ from one another. They’re human just like the rest of us. I met with a couple oncologists at Mayo Clinic in Rochester, MN, shortly after my initial diagnosis. Overall, they agreed with the treatment plan suggested at Carbone Cancer Center in Madison. Mayo was more open to surgery options. I liked them quite a bit but it was just too far a trek for regular care. I had top-notch care a few mere miles from home.

A couple of years ago I sought out another second opinion within my provider network and it wasn’t very helpful. It wasn’t hurtful either, just not worthwhile. This oncologist let me know what his opinion was on my options. I let him know what I thought of his limited research. He was not open to complementary cancer supports. I was not a good fit with this oncologist. In my opinion, he defines healing with a very limited scope. Every once in a while I see a clip of him on the local news. He has a great reputation, but I am so glad I have the oncologist I do, who also has an excellent reputation. My position is that healing includes many different aspects that work together.

I’m going to repeat that: Healing includes many different aspects that work together.

No one heals in a sterile petri dish or test tube.

My health journal helps keep all my medical information together.

A health journal has been incredibly useful for my oncology visits. It really helps with dates and specifics as to how I’m feeling, my questions, how and when medications were tweaked. I am a planner. I make the most of the short time I have with my doctor. Sometimes it isn’t so short, but again, that’s the kind of survivor I am, and I’m going to take the time I need. My health depends on it. I believe one reason I’m still doing well is because I’m able to keep really detailed notes to report to my doctor and have one place to keep all my information.

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I’m also more of an anxious person than I used to be. Cancer and anxiety go together. Keeping a health journal eases some of my anxiety because it gives me power. An added benefit is the built-in memory that naturally exists with documentation.

Ask questions. A short office visit doesn’t suffice for what I need to feel as a satisfactory visit, even with my health journal in tow. It wouldn’t hurt if office visits were about ten minutes longer than they are now. The oncology nurses are good resources in getting word to your doctor, as is electronically messaging your doctor through MyChart or any similar online technology. I am important enough, and so are you, to have your questions and concerns answered and acknowledged in a way that you understand. It is okay to disagree. I do believe everyone is there to advocate for your best care, but that doesn’t mean you blindly agree to something you don’t understand or have reservations about. There may be something even better for you.

I do believe the answer, a cure, lies in research and things like immunotherapies, targeted treatments, genomics, personalized medicine, and medical advances that haven’t happened yet.

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This is why research for advanced stage cancers is so important. More research dollars need to be allocated to advanced stage research! Click here for some suggestions. There needs to be a lot more access to better treatments and drugs that are more effective for those of us living with secondary cancer. We deserve access to advances in immunotherapies, targeted treatments, personalized medicines, and new therapies. It isn’t an option to run out of options. Keep telling your oncologist this over and over again. They meet with the other oncologists in their network to discuss cases. If they keep hearing these demands from patients, it’s more likely medicine will go in this direction.

Keep speaking up.

Patients can help steer these discussions by continuing to advocate for what they need in their office visit.

Healing and a cure are not interchangeable. A cured person may not be healed. Trauma, fear, and other physical or emotional issues can still interfere with living fully. Healing and a cure will inevitably overlap as healers, doctors, and patients work together. Stranger things have happened. Healing and a cure absolutely can overlap. I keep striving for both.

I am ever hopeful I will find a way. Always.