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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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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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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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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Image credit: pixabay.com

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.