24

I love 24, the TV show. Elliot and I stumbled upon it years ago when we were staying in a hotel and then we were addicted. We went back to the beginning and watched every single episode more than once. We were binge watching before we knew what that was!

And so, as I often do, I started thinking about applying the “lessons” of the show to living with metastatic breast cancer (MBC) and here are the results of my ruminations …

  1. Main characters die all the time. I think this was one of the most astonishing things about the show. New characters show up all the time and some of the ones everyone starts to like or hate die off every season. It was shocking when we were watching it the first time, now I compare that to the people who die every day of MBC, people who are necessary and important and who I grow to love. The world is poorer for their absence and yet nothing can be done in the near future to save their lives.
  2. As soon as one crisis is over, it’s on to the next. This idea is heightened in the fast paced hour at a time format of the show. I remember thinking, how could any one person deal with that many days of crisis, even if the days were separated by years of down time?  Fast forward and I live through days of crisis all the time now, where life and death are both possible and immediate.
  3. The people who are good in a crisis are often not good at relationships.  I think Jack Bauer is a quintessential example of someone everyone wants involved in a big crisis and yet he struggles to connect with others. An important reminder for those situations we all encounter when various friends can handle various things. Remembering to give everyone credit for their own strengths and not crucify them for their weaknesses is important. Doesn’t help with the hurt that results from the abandonment of friends.
  4. It is a rare person who acts in other’s best interests. At the end of the day, it’s a reliable fact that most people will act in their own best interests. And yet, there are people who are able to set aside what is best for them individually and act in the best interests of the whole. I’ve seen other patient advocates who demonstrate this day after day.
  5. Death happens and the world keeps moving. This is a hard one. It often feels as if the world should stop as we lose friend after friend at a rate of 116 men and women each day in the US. Yes, the world keeps moving but it is less bright and poorer for their absence.
  6. One day or one situation does not define an entire life. Just like a diagnosis of terminal cancer does not define my whole life. I, and the others with MBC, have lives outside of our cancer experiences and treatment. Important to remember.
  7. Your friends are the people who stick by you no matter what. True friends will indeed show up when you need them. It is those people who aren’t truly friends who walk when the going gets tough. The ability to tell the difference is key.
  8. When you are good at something, everyone knows. Competence is attractive on many levels and those who are good at something don’t usually have to advertise it.
  9. While I know Jack Bauer is a fictional character, I wonder how he would have dealt with a terminal cancer diagnosis? I often wonder about how others might handle this diagnosis, both real and imaginary people. Watching someone who is good at handling crisis makes me think that they might handle this kind of crisis; at the same time, an intense crisis is different from a chronic crisis.
  10. Why wouldn’t someone want to make a TV show about a metastatic cancer patient? We deal with more on a daily basis than most people would deal with in a life time and we often do so with a good attitude.

So there you have it, cancersplaining by Jack Bauer and the case of 24! Would you add anything specific?

How can I help?

I wrote a blog post recently that really resonated with a lot of people about how I feel about dear friends dying and how hard it really is to live with a terminal disease. Yes, despite some efforts to recast Stage IV metastatic breast Cancer as “chronic,” the rate of 116 men and women dying per day in the US of the disease clearly confirms that categorization as incorrect. Attempting to minimize the severity of the diagnosis will only backfire, in my opinion. Metastatic Breast Cancer (MBC) is a terminal diagnosis that limits the life expectancy of anyone diagnosed.

Anyway, several of the comments on my post pointed out that while I came clean (not an easy thing) and admitted that I indeed need help, I did not delineate how I would prefer that help be offered. In light of that input, I decided to sit down and create a list for those you who are interested. Feel free to disregard if you are not!

I’d like to take a moment and recognize Cheryl Kaufman, who when reading my blog post about needing help, she sent me a much appreciated box of goodies!

First of all, don’t overlook the power of simple questions like … how are you? I may not answer right away but I will eventually and the positive effect of knowing someone is thinking about me is profound. It’s not a bother to reach out. Also, there are specific times that my anxiety is increased, like when I have a new symptom or pain, or when I have a scan coming up, or when I’m starting a new medication. I try to alert people when these are coming, but it’s also not a bother to ask if someone is coming that would create additional struggles.

Secondly, advocacy and sharing information about Stage IV metastatic breast Cancer is huge. Sharing my story with others, encouraging people around you to take little known symptoms of breast cancer seriously, and suggesting that no one buy “pink” products that don’t help breast cancer patients, these are all good things everyone can do in their own communities. Sharing my blog or other posts about the actual experience of living with a terminal illness is another idea.

Third, I have a very restricted diet, so sending food could be problematic. We do order from Uber eats regularly, so a gift card would be extremely helpful. I also cannot eat sweets or carbs, but my kiddos love chocolate! Best advice in this category, probably not a great idea to send food.

Fourth, I love to read. I read every day. Mostly on my iPad or phone, but I also love to hold books in my hands. Sending me your favorite book or books would be amazing. I have a Goodreads profile with thousands of books read, so if you are thinking of getting me a book, feel free to friend me and see what I might not have read. Or ask!

Fifth, tickets to do something with the boys is a great option. I’m literally cleaning out my closets and drawers in my version of Swedish Death Cleaning, so sending me items is not usually helpful. They are extremely active and love to be outside and we have lots of options here in Florida. If in doubt, just ask!

Sixth, I get an infusion once a month and I love wearing socks because the infusion center is pretty cold. I also love wearing socks that have applicable sayings on the bottom. I’m sure one or two of you have seen some of the socks I have and you’ll know that I don’t mind sarcastic or profanity laden sayings. Socks are a great conversation starter in the infusion center! Just a note here, I don’t need any more slippers!!

Seventh, aromatherapy options. I do love candles and essential oils. Anything that is formulated for “calm” is a good idea. I do prefer doTerra as a company because of how they source and process the oils, generally. I can’t think of any specific oils or blends that I don’t like but when in doubt, ask! There are also some cool jewelry options too in order to carry such scents everywhere. This is especially key since I’m in and out of medical offices and infusion centers, etc, and it often doesn’t smell good.

Eighth, pajamas or yoga clothes. I somewhat tongue in cheek tell people that I no longer wear clothes. I’m either in pajamas all day, differentiating between nighttime and daytime pajamas, and I go to yoga three times a week. Can’t go wrong with comfy clothes! I also have tons of comfy blankets, some of which have been permanently stolen by my kiddos — so, blankets are not a need.

Ninth, I have lots of appointments and infusions. I often go to these appointments alone. While some appointments are ones that I need to attend alone, I’m usually open to someone coming along. Infusions, especially.

Tenth and finally, sometimes I need to talk about cancer. Sometimes that’s all I can think about. But I also need to be reminded often about how I still have a life to live and there are important topics outside of cancer. Parenting, for instance. Talking to people, engaging in the wider world, and focusing on something other than impeding death for me and my friends, is important.

I hope some or all of these suggestions are helpful for people who are interested in knowing how best to support me or someone else who has cancer. Remembering that we’re still here, we’re still human, and we still need community is literally the most important for anyone in a crisis like cancer. I’m not suggesting it’s easy, just as many important things worth doing aren’t.

How do you answer the question: “How are You?

What is in the middle of “fine” and the whole sordid story?

I confess that sometimes I verbally vomit the entire story on unsuspecting people who have innocently asked a socially acceptable question. At some point along the way, I’ve lost the social acceptable response … or have I?

Why do people ask how you are when they don’t really want to know all of it?

I’m sure I’ve asked the question when I didn’t really want to know the whole story.  I know I have responded automatically, as if by rote, when someone asks me how I’m doing.  It’s the polite thing to do, after all, to inquire.  Yet, is it really polite to ask the question if we don’t really want to know?

When did politeness take the place of real concern?

I confess to having a weird relationship with social graces.  On the one had, I have internalized the social cues and requirements of my Midwestern upbringing.   I’ve read books by Emily Post and found myself nodding at all the small things that I learned from my grandmothers and great-grandmother.   I still cringe at things that are completely acceptable here in South Florida.  I’ve had to adjust my idea of acceptable social touching since moving to the South where everyone is embraced and kissed on the cheek automatically.  It’s taken me decades to break out of the polite acceptance of violations of courtesy or my expectations in public.

Being diagnosed with a terminal illness and carrying all of the consequences to my mental health along with the cognitive damage from chemo has finally burned away many of my closely held societal expectations of my behavior and the behavior of the medical professionals I see nearly every day.  I’d always been inclined to fill out surveys and it was not abnormal for me to complain about bad service.  Cancer and all that comes with cancer finally burned all the rest of any hesitation away.

So, despite the fact that I am sure it is often socially unacceptable, I reserve the right to burden anyone who asks me how I’m doing with the whole story.  You see, I have a story.  I have a deliciously detailed story with many anecdotal conclusions.  I’ve figured a lot out over the last nearly three years of having a terminal illness.  I’ve come in contact with lots of different people and I’ve accumulated knowledge like a squirrel preparing for winter.

Fair warning.

Dehumanization

First of all, let’s look at the definition:

dehumanize: de·hu·man·ize | \ (ˌ)dē-ˈhyü-mə-ˌnīz, (ˌ)dē-ˈyü- \ to deprive (someone or something) of human qualities, personality, or dignity: such as

a: to subject (someone, such as a prisoner) to conditions or treatment that are inhuman or degrading“… you treat people with respect, you get respect back. You treat them like animals, you strip search them, you dehumanize them, you lock them up, you don’t feed them … you are going to get that back … “— Adelina Iftene

b: to address or portray (someone) in a way that obscures or demeans that person’s humanity or individuality propaganda that dehumanizes the enemy; I’m always struck by the way language is used to dehumanize others.— Anna Lind-Guzik; Treating Chicagoland violence as merely a tally necessarily dehumanizes its victims, but it also obscures so much of the larger story about that violence.— Gene Demby;

But that approach ignores the fundamental dynamics of racism, which is

c: to remove or reduce human involvement or interaction in (something, such as a process or place); Nurses are also fearful that the use of technology will dehumanize patient care.

https://www.merriam-webster.com/dictionary/dehumanize

I’ve been thinking a lot about the habitual treatment I receive at my cancer center. While the majority of the doctors (with a few notable exceptions) are amazing, the vast majority of the staff treat me with a mildly disguised contempt, as if they are irritated at having to be in my presence.  In other words, the treatment I receive at my cancer center from many, if not most, of the staff is dehumanizing.

Let me cite a few examples from just the week before last … since I’ve been treated there for over 27 months, just think about how many incidents have occurred.

First up, the pharmacy tech who acknowledged that the answers to all the questions she was asking me were readily available to her in my file and she was simply asking me and taking up my time because it was easier for her.  She then told me that my cancer medication would be withheld from me until I capitulated to her demand that I regurgitate the details in my file rather than her taking the time to look it up. In essence, this employee felt it was fine to threaten my life (since the cancer medication is literally keeping me alive) unless I made her life easier. I’m still amazed that I was able to keep my conversation with her devoid of f-bombs.

This is an example of dehumanization/degrading in that the pharmacy tech put me into the position of doing her job as if I report to her. She didn’t ask if I had time to answer the list of questions or if I had access to my calendar at the time she called. When information is readily accessible to a front desk person, attempting to withhold medication until a patient performs the job that the front desk person is being paid for is completely inappropriate. In fact, I’m pretty sure there’s one or two laws that would apply as well. Pretty sure there could be an argument for a charge of attempted murder, just so she could save herself a few minutes.

Coming in second place was the scheduling person who left me the following message … “Hi Ms Johnson, this is (first name only) calling from (cancer center) with an urgent message. Please call me back at (main number to cancer center) as soon as possible.” This message may not seem like such an issue until you also have the context that my cancer center is huge and there are probably 20 people working there who have the same first name, rendering it impossible for me to return the message. After over 45 minutes of being transferred around the cancer center, becoming more and more panicked, I finally figured out who called me. The explanation for leaving such a vague and non specific message … HIPAA. Clearly, these people have never read HIPAA. Also, I can HEAR it when people leave the “t” out of my name.

This is an example of dehumanization in that the person leaving the impossible to return message created a panic attack and took hours out of my day that I can’t get back. She was entirely unconcerned about that and didn’t make any effort to understand why I was panicking and also because HIPAA has nothing to do with the cancer center employees’ information. Her leaving her last name or the name of her department was necessary for me to return the call and there was no reasonable reason to withhold that information from me. In this situation, I was treated as if my feelings and the affect on me was entirely inconsequential and without value. In essence, that I am without value.

Third and the absolute worst is the scheduling person who came up to me at the end of my infusion on Valentine’s Day, when I was already late to my next appointment because, as usual, I wasn’t brought back on time for my appointment, to hand me three pages of scheduled appointments. Those three pages were appointments this scheduling person had made for me without checking with me or my doctor to see if I needed any of those appointments or if I was available for said appointments on any of the dates. THREE PAGES!!!

This is dehumanizing in that it assumes that I will simply follow instructions and show up whenever they demand. It is also dehumanizing and condescending to my doctor in that the scheduler was behaving as if she knew more than my doctor by scheduling appointments no medical person who actually knows anything about my care told her that I needed. She was not apologetic or understanding when I asked her how she knew I was available for the appointments. Her assumptions skipped over the fact that I’m a person, a wife, a mother with responsibilities and treated me as if I am a widget to be placed as they desire.

I am fond of telling people that my treatment must fit into my life, not the other way around. Cancer is a big part of my experience and will be for the rest of my life, but cancer is not my life. People in the healthcare system have a responsibility to treat patients as people and to make a concerted effort to ask questions to understand how what they are recommending to me done fits within that patient’s life.

In each of these situations, I spoke with the patient’s supervisor. Two out of the three were completely dismissive and only made the situation worse. The culture of dehumanizing patients is something both set and perpetuated by the leadership of any organization. In this situation, it’s pretty clear to me that the culture of my cancer center is to blame.

So, are the relationships with my doctors sufficient enough to overlook a culture of degrading patients?

That’s a question that I’m still trying to answer.

Before anyone thinks I’ve not been proactive, I submitted a five (5) page spreadsheet of concerns and proposed solutions to the leadership of my cancer center last year and I’ve been involved with a working group since that time attempting to address them. While it seems that some of my concerns may be addressed, there is still so very far to go.

 

When a friend is dying

Before my diagnosis of Stage IV Metastatic Breast Cancer (MBC) in 2017, death wasn’t a concept that had been a significant part of my life experiences. I lost a few grandparents and other extended family as I aged but they were elderly and ill and they were, arguably, ready to be done with living with their physical limitations.

Dealing with the constant death and decline in the MBC community is a very different thing. It’s not generally common within the expected life experience to receive a text from a thirty-something friend that reads something along these lines:

“I’m afraid I might be slowly starting to die.”

A variety of responses occurred to me. You see, those of who are also terminal, we think about this a lot. We talk about death and preparing for death a lot. Yet, for us too, when it’s more immediate for someone else, it’s both difficult to know what to say and it’s also triggering. Triggering our own fears and other feelings about death, our own death.

In this situation, I swallowed my own fear and complicated feelings about my own death and I entered into the discussion. I asked questions, I tried my best to empathize and then I got on Amazon and ordered her some things to make her feel more comfortable. As I’ve often said, I’m a do-er and I show most often love to those around me by doing/giving something.

And then I cried.

I cried for my friend, her family, her friends and I cried because this isn’t the last conversation I will have with someone with the same disease that I have about how their death is imminent. I cried for myself and my children and my family because before long, that will be me. I cried because the world will be less bright when my friend leaves. I cried because so many people and companies don’t allocate resources and services the way they should for terminal patients. I cried and cried.

After I cried until there were no more tears left, it was my instinct to simply curl up and sleep the day away. It was my instinct to withdraw from the support groups where I interact with patients who are actively dying. It was my instinct not to say anything, not to reach out for help.

Why?

Even after nearly three (3) years of living with terminal cancer, I still find it hard to ask for help. Any kind of help. My mom is really good at intuiting that I need something; much better than I am and I appreciate that. I think others around me don’t often know when I’m struggling or how to help. I know that I often project that I don’t need help and that means I don’t experience the help that could be offered to me.

And I know that addressing a problem begins with admitting there is an issue.

With that in mind, it’s true, I need help. I’m dying. My life won’t end tomorrow or even next week or even, God willing, next year. But I have a less than 25% chance of living two (2) more years. It’s a sobering reality that I live with every day and I talk about with others who are metastatic, but I don’t always remember that healthy people need to hear this too.

I’m a capable, resilient person and it kills me to admit that I can’t do everything, but it’s true, I can’t. I also know that when others are given the opportunity to love on others, to meet the needs of a member of their community, it truly is a win for everyone. I’ve done my best to do that for my community and I’m used to jumping in to help. I just need to remind myself that asking for help is not a bad thing and that there are others out there who love to help as much as I do.

Asking for help doesn’t equal failure in some way, it just means acknowledging the fact that we’re human and humans need help.

Does anyone know if there is a support group for people who don’t like asking for help? Asking for a friend …

Ring Theory

I ran across this theory early on in my experience with Stage IV Metastatic Breast Cancer and it really resonated with me. The longer I’ve lived with the disease, the more it resonates with me. While I’m horrible at asking for help and often overestimate what I can handle, the kindness of some family and friends has driven home how important this idea really is. Actually it’s probably more the actions of some family and friends who have not shown kindness that has really driven home how important this concept is to those of us who are dealing with a health crisis.

I’ve included a link below to the full explanation of the theory, but here’s a quick paraphrase:

Here are the basic tenets, paraphrased from Silk and Goodman:

  1. Draw a circle. In this circle, write the name of the person at the center of the Health crisis.

  2. Now draw a larger circle around the first one. In this ring, put the name of the person next closest to the crisis.

  3. In each larger ring, put the next closest people. As Silk and Goodman state, “Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. . . When you are done, you have a Kvetching Order.

A pictorial representation may help;

The basic idea is that the person in the middle does not receive the venting/kvetching from outer circles, especially when said venting is about the person in need of help. For example, if you are a family member of a terminally ill patient who spends the night in the hospital with your dying family member, you don’t then get to complain to that dying family member about how that night away from your family was stressful for you or how others in the family did or didn’t communicate nicely when arranging for someone to spend the night.

Why?

This theory takes into consideration that the person who is dying is carrying a much heavier psychological load than anyone else and that close family is affected more than distant relatives or acquaintances. In essence, this theory is how to demonstrate love in a clear and understandable way. Violating this idea creates more and more angst and damage to the person who is already carrying more than a healthy person ever could understand.

Why would someone who loves a dying person want to cause further damage?

Here’s an article that lays out the ring theory in much more detail for anyone who is interested in learning more. https://www.psychologytoday.com/us/blog/promoting-hope-preventing-suicide/201705/ring-theory-helps-us-bring-comfort-in

Pity versus Empathy

Pity is feeling bad for someone. Empathy is feeling bad with someone.

This is a picture of the feeling buddies that I’ve used for years with my boys to name their feelings. There are songs and worksheets through Conscious Discipline that we use as well. It is sometimes astonishing to me how much I learn from attempting to teach my boys about their emotions and how important it is.

For instance, this school year, my 4 year old started coming home pretty much every day primed to have a meltdown. At first, I did interpret the behavior and commentary as insubordination and punished him accordingly. Then, I finally realized that he was holding in those big feelings all day at school and when he was able to relax, they all came out. Once we figured that out, the time after school has gotten a LOT smoother and I’ve been able to show him much more empathy than before. We also can’t plan outings right after school without a lot of planning.

I often ponder the differences between pity and empathy as I encounter different people and very different reactions to my diagnosis. Initially, I didn’t tell anyone and often reacted angrily when people would ask about my bald head or why I was limping. Now, I often use my diagnosis as a bit of a weapon, dropping that information like a bomb on unsuspecting people I want to feel bad. Yep, I have used the knowledge of my diagnosis to make people feel bad at times, sometimes for honorable purposes and sometimes just to get what I want or because I’m mad at something. I get it, not so nice. I’m not above fighting with every tool in my arsenal.

The different responses I receive have a lot to do with if the person is feeling pity or empathy. The ones who pity me, will acknowledge the information, usually in a surfacey way and move on without engaging or feeling much of anything. The rare ones who show empathy, are literally stopped in their tracks.

The differences are profound.

With the ones who demonstrate pity, I often feel dirty after talking with them. The concept of pearls before swine comes to mind and usually I regret giving these people information about me. Many of the people I talk to at my insurance company or my cancer center fall into this category. They may feel bad for me, but it doesn’t change their behavior, they don’t do anything differently and much of what they do or don’t do makes my life much more difficult.

The people who show empathy are rare and their reactions often surprise me. I live with death all the time, so talking about things that seem normal now often surprise others. I had an extremely poignant conversation with the lady doing my facial at the spa for my birthday. She was in tears and made a donation to Metavivor right in front of me. That was powerful.

As 2020 ramps up, I am reminded that to enter into real relationships, empathy is a necessary ingredient. Remembering how I feel when on the receiving end of both pity and empathy helps me to remember which one is more important.

How will you show empathy?