Expectations, Part I

I’ve been thinking a lot lately about expectations and particularly the expectations that have been unfulfilled in my life since I’ve been dealing with Stage IV Metastatic Breast Cancer (MBC). For me, I often don’t realize in the moment that something happens that an expectation has been unfulfilled, it’s usually once I have time to process what has happened that it occurs to me. Sometimes this happens in conversation with others, sometimes just when I’m ruminating over a situation or conversation or event. It’s …. complicated.

Let’s start with the dictionary definition:

1: the act or state of expecting: ANTICIPATION in expectation of what would happen

2a: something expected not up to expectations; expectations for an economic recovery; b: basis for expecting : ASSURANCE they have every expectation of success; c: prospects of inheritance —usually used in plural.

3: the state of being expected

4: EXPECTANCY sense 2bb: EXPECTED VALUE

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

I think the bottom line is that an expectation means you were counting on something and when that something doesn’t happen, it’s difficult and it requires a reshuffling or reallocating of emotions or resources or something. These expectations can be very tangible (e.g., an inheritance) or more intangible (e.g., emotional support). I’ve not been able to parse out which is worse, each are difficult in their own ways.

In my experiences as a lawyer, there is a concept of relying on someone or something to one’s detriment. For example, a person expects that a contract will be signed and, in reliance on that expectation or promise or contract or handshake, that person turns down other contracts. If that original expected contract doesn’t come through, then the person has missed out on other contracts. Because of this negative outcome, the law sometimes allows for restitution.

Translating this into relational expectations, I think it could be said that if one relies on one person for something, then one doesn’t necessarily develop relationships with others who could fulfill those needs. And then what? The person who does need help or support or whatever, is required to scramble or lean on the people who are already supportive or just make do.

At the end of the day, I have come to realize that expectations are dangerous, especially the unspoken kind. How can any other person know what is in my head unless I tell them? The internal conflict arises for me when it feels too needy to express expectations. This is something that has pretty much always been a particular struggle for me personally. I’ve always been the helper, the caretaker, the strong one and, over time, I’ve developed a lot of habits that harken back to that time. Those habits don’t go away quickly, even after 3 years of dealing with MBC.

Additionally, I think sometimes expectations are based in often outdated cultural norms. For example, I grew up in the Midwest and the answer to anything is “bring a casserole” along with activating prayer chains and quilting circles, but no physical contact generally. When I set up a meal train to organize meals after a new friend here in Miami had a baby, I was shocked that very few people signed up. Explanation — not the cultural norm in Miami.

So, what to do with all of this?

I haven’t the foggiest … stay tuned for Part II!

Ordinary Love

One of the things we talk about regularly in our Stage IV cancer support groups is how often the media gets it wrong with the language that is used and when. We hear “She lost her battle” regularly and the commercials for various cancer medication are often nauseatingly upbeat with a lack of the miserable side effects shown. A big culprit of the toxic positivity that is often imposed on us is pinkwashing, but that’s a blog for another time.

Our experiences within in the breast cancer community are so varied and complex, but there are some themes threaded through all of our lives that are simply missed by popular culture and the organizations that purport to serve us. Don’t get me wrong, I do think that some companies get it right, but the vast majority gets it wrong.

With this in the back of my mind, I appreciated the movie Ordinary Love and its efforts to include both the experience of breast cancer patient and the caregiver. It doesn’t hurt that the actors are both exemplary in their ability to get inside the emotions of the experience on both sides. A picture is often worth a thousand words.

I think one of the things that most resonated with me was that the people depicted in the film are ordinary, not special. Breast cancer is the very definition of an equal opportunity disease, striking men and women of all ages, from all walks of life and varying underlying health. The movie showed that, the reactions and struggles with all the expected human foibles present.

Ordinary Love is well worth the watch, just have some tissues present.

Electronic Resources, Overview

I’ve often said that those of us in the breast cancer community are in the best position to know what would be helpful to the community. The men and women I’ve met in the last three years have more than impressed me with their creativity and commitment to helping others without asking anything in return. I’m sure there are amazing people in the larger community too, but I’ve never seen the numbers and focus before I was diagnosed with breast cancer.

One such person is Marianne Sarcich, my new friend. To help others, she has spent countless hours working on researching, verifying and collecting a list of all the electronic offerings for breast cancer patients. Rather than trying to charge for the fruits of her labors, she is sharing the information freely.

See what I mean? Amazing!

Here is the link to the information Marianne gathered: https://drive.google.com/file/d/1E2–omgHVd8Ec6EYw4So6FN9gRYEyWOk/view?usp=drivesdk.

Regular updates have already been provided and will be again as things change and develop. Check out the companies who are doing the best job at adjusting to the quarantine and give them some love!!

Stay safe everyone!!

Electronic Resources, LBBC

In this unprecedented time, many organizations are pivoting to provide the same or similar resources electronically. The organizations who are having to adjust range from government, to non-profits, to public health, to for profit companies. Frankly, I’ve been blown away and significantly impressed at how breast cancer organizations have been able to continue to do their vital work with some adjustments to accommodate social distancing.

One such organization is Living Beyond Breast Cancer (LBBC). I was privileged to participate in the Hear My Voice Advocacy program in 2019 and have been participating on the Advisory Committee for the 2020 Metastatic Conference, which will be conducted electronically on June 13th and 14th. Additionally, LBBC is continuing to provide grants to men and women in active treatment. In an effort to help even more, LBBC will hold their Reach and Raise fundraiser this weekend!!

Check out this link if you are interested in getting involved with Reach and Raise this weekend: https://facebook.com/events/s/virtual-living-beyond-breast-c/586039361942758/?ti=icl. If you are interested in giving money to support LBBC’s ability to give grants to men and women in active treatment for breast cancer, feel free to check out their website or drop me a message and I’ll hook you up.

Those to whom much has been given, have a responsibility to help as they can. Give and give generously!

Reblog: Fibromyalgia Awareness Day: Quality of life impact

I’m sharing this blog, that I didn’t write, about an illness that several dear friends deal with. Read on …

May 12th is Fibromyalgia Awareness Day. The day I talk about Fibromyalgia More than usual to spread awareness and reduce stigma. A brief history of …

Fibromyalgia Awareness Day: Quality of life impact

Compassion Fatigue

I was talking to a friend the other day about some frustrations with fundraising. She mentioned that it seems that some people are no longer exercised or stirred up about various issues in the world, particularly those of us who are continuing to die at a rate of 115-116 people every day in the United States. We speculated that COVID-19 could be using up most of the available energy and funds, which is definitely resonating with me; at the same time, I also think we are seeing and will continue to see an increase in “Compassion Fatigue.”

Let’s start with the dictionary definition …

Definition of compassion fatigue

1 medical : the physical and mental exhaustion and emotional withdrawal experienced by those who care for sick or traumatized people over an extended period of time.

Unlike burnout, which is caused by everyday work stresses (dealing with insurance companies, making treatment choices), compassion fatigue results from taking on the emotional burden of a patient’s agony.— Tim Jarvis

2: apathy or indifference toward the suffering of others as the result of overexposure to tragic news stories and images and the subsequent appeals for assistance.

Several fundraising experts said the Las Vegas collection may trail other donation efforts for several reasons, including “compassion fatigue” … . “Compassion fatigue is a real thing. There have been so many things that happened this year,” [Sandy] Rees said. “But it does get overwhelming, and I think people start to tune out.”— David Montero

https://www.merriam-webster.com/dictionary/compassion%20fatigue

We human beings only have so much capacity for suffering, for the suffering of others, and the emotional toll that entering into suffering costs. Some have more capacity than others. So, what happens when a person reaches the end of their capacity? As the definition above states, apathy and indifference, some of the most painful things a human can experience emotionally from another person.

The opposite of love, after all is not hate, but indifference.

When another human being observes another in pain or is even directly asked to intervene, and they don’t, the first and likely most inevitable reaction is to take the lack of help personally. I also think expectations are part of why it’s often particularly difficult to reconcile personal feelings and differing reactions to the same circumstance. Imbalances of power a/k/a one person needing something from another may also exacerbate gaps of understanding.

Brings to mind the 1998 movie, “You’ve Got Mail,” where Tom Hanks is trying to convince Meg Ryan that his attempts to drive her independent bookstore out of business with the giant box store bookstore he opened right around the corner, “is not personal, just business.” Meg Ryan, playing Kathleen Kelly, retorts:

“I am so sick of that. All that means is that it wasn’t personal to you. But it was personal to me. It’s personal to a lot of people. … Whatever else anything is, it ought to begin by being personal.”

https://www.imdb.com/title/tt0128853/

I think it’s easy to forget that we human beings are built for community and connection with each other. When that begins to break down, everyone loses. Those of us who are looking at the funds we need for metastatic cancer research being reallocated to the urgent issues of COVID-19 and the aftermath, are worried. Worried that our lives are not considered to be as important or as immediate.

So, what’s the remedy? What are we to do?

I can’t say that I have found THE answer; at the same time, here are some thoughts I’ve had about my experiences with compassion fatigue:

  1. Ask sparingly. Everyone is bombarded right now because so many people are struggling with things that weren’t as much of an issue previously. Consider that carefully and plan strategically. There are so many organizations that are struggling more than before COVID-19 and it’s hard to differentiate. It’s not easy.
  2. Show Gratitude. It’s important to remember that a $15.00 donation from one person may be the same level of generosity as $50.00 or $100.00 from someone else. Whatever the level, showing gratitude is always a good idea and in this age of so much electronic communication, handwritten notes are even more appreciated.
  3. Choose your language carefully. Asking for money is more of an art than a science. Finding the right persuasive language is super important so that you don’t under or over sell the need. I’ve learned the most by watching other people asking for money. If I feel compelled to give, then I take note of their methods.
  4. Don’t assume. I struggle with this at times, looking over communication and trying to read between the lines. Assuming anyone’s motives is a minefield and should also be avoided as much as possible.
  5. Ask lots of questions. Building on the previous recommendation, the only way not to assume or read between the lines is to ask questions. Empathy results from being able to walk a mile in another’s shoes and you can’t do that without information.

As to the emotional fall out when the people around you who are not able to help, that can be a much bigger deal. Being self-aware and checking in with yourself about how you are feeling is key in addition to having a trusted person in your life to be able to help evaluate your perspective. Additionally, being vulnerable with others in the same position can provide much needed commiseration.

Finally, don’t “should” on yourself. No one has this stuff completely figured out and the pressure to have it figured out is too much to carry needlessly. Be kind and gentle to others, but first to yourself.

Statistics

I’m not a statistician and I struggled in the one statistics class I had to take in college. This is not about how to calculate or how to understand statistics as I’m so not the person to hand out that information. This post is to explore the uneasy relationship those of us with Stage IV metastatic breast cancer have with statistics.

When I was initially diagnosed, my doctor shared some statistics with me. I realize this is not everyone’s experience since some doctors are wary of scaring patients and legitimately, no one person’s life can be explained by a statistic. However, for Type A people like me, knowing how much time I have to plan is pretty significant. I turned to the known statistics to try to get a sense of how much time I really had left. My current medical oncologist isn’t a fan of looking to statistics to try to plan and so I’ve been left to muddle through the morass on my own.

Turns out, there are a lot of different perspectives and statistics drawn from different data sets out there. Makes it a little difficult when one is looking for data to rely upon to make decisions. Plus, I learned a few things about how statistics can be manipulated and that means I tend to look much more carefully at what others claim to be reliable statistics. I’ll never be a statistician; at the same time, I’ve learned a little too much about interpreting data and I’ve become even more skeptical of those that confidently state a statistic without support.

At the end of the day, I’ve discovered that no one really knows the answers to the questions that I would like to have answered.

And that’s really frustrating to a planner like me. We live in the chunks of time between each scan because that’s what we have to do. We wait to make decisions about traveling or activities until I know if the cancer is behaving itself. We all hold our breath when a scan comes and we wait to find out what our life will look like for the next few months.

This living in the increments of time between scans has been, frankly, awful for everyone involved. This captivity to information; a reliance on a broken system, is traumatic in ways that are hard to articulate. We are no longer free agents, able to make the decisions we need to for our family. When I want to do something new, one of the steps that has now become a necessity is to ask my doctor. I think I hate that the most. Don’t get me wrong, my doctor is great; at the same time, I don’t give away my decision-making authority easily.

And yet, that’s just one more thing that MBC has taken from me.

Back to those statistics … the one that scared me the most was that the median life expectancy for someone diagnosed with MBC is 2-3 years. The next one that scared me is that at diagnosis, each person has a 24% chance of living 5 years. Once a person living with MBC has passed these milestones, the likelihood of living longer starts to climb. The likelihood of becoming an outlier grows with each year lived past the diagnosis. There are obviously lots and lots of details that adjust one’s life expectancy, like age or subtype or disease load, so these numbers aren’t as reliable as one would hope.

Here’s another statistic that I do like: one study showed that people who have bone only mets like me live an average of ten (10) years after diagnosis. While this is nowhere near the amount of time I want to have with my kids, it’s better than 2-3 years, I suppose.

My conclusion is that statistics are only truly helpful in certain contexts. The statistics I described above are ones that I use often in my advocacy efforts because they are shocking and compelling. Applying those same statistics to real life are just more problematic. Putting the statistics in the right context makes them more palatable.