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.

Experience applying for disability benefits

Disclaimer: I’m a lawyer in Florida only and this post is about my personal experiences applying for disability benefits. Nothing in this post or in any of my other posts should be considered legal advice. If you have legal questions, you should get in touch with a legal professional with experience in the issues you need help with.

When I was diagnosed with Stage IV Metastatic Breast Cancer (MBC), I realized very quickly that the stress I’d been carrying as the owner of a law firm was not something that could continue. Since my husband and I prepared well, I have a private disability policy that is quite comprehensive along with disability riders that mean we don’t have to continue paying for the life insurance policies that will fund my trust and provide funds for my husband and my boys after I die. The private policy gave us the freedom to do what needed to be done and for my husband to not carry as much of the financial burden. We did set up our lives based on two incomes, after all.

And yet, I knew that I’d paid into social security while I have been working (since 16) and that I could access those benefits as well. I’d worked a bit with public benefits when I was working with children in foster care as a Guardian ad Litem (GAL) or Attorney ad Litem (AAL), so I knew enough to be dangerous. It took a little research and some time gathering my medical information and I was able to apply for benefits from the comfort of my own home.

The first item I researched was eligibility. The good news about having a terminal illness and applying for disability is that there isn’t a need to prove my limitations, the things that are still hard to do. Based on my diagnosis, I was eligible for funds and also eligible for a more expedited review. The bad news about my eligibility is that there is a waiting period of five (5) months. Abolishing this waiting period is one of the subjects of a bill still pending in Congress as it literally makes very little sense. Once one has MBC, there’s no coming back from that.

The second item I researched was when I should apply. After that 5 month period expired, there wasn’t a proscribed timeline, but I learned that I could only get twelve (12) months of back pay. I was officially diagnosed with MBC in June of 2017, so the initial 5 month waiting period ended in December of 2017. In order to get all the possible funds, I had to then apply no later than December of 2018 otherwise there would be funds that I would never receive. So, that’s what I did.

When I was actively practicing law, the children who received disability benefits for themselves or the children who were dependents on someone who was receiving disability benefits and thus received derivative benefits, made calculating child support quite complicated. From that experience, I knew that my two (2) boys would be entitled to their own derivative benefits because of accessing mine. I had this in the back of my mind as I worked to gather the information I needed to apply.

When I sat down to fill out the online disability application at SSA.gov, I had too much information! I literally copied and mailed over 200 pages of medical records, also way too much. At the same time, I wasn’t worried that I missed anything! The application took me over an hour to fill out and while I had everything I needed to fill it out, I did have to do a lot of looking and hunting for specific dates and information.

Once I had filled out the application, then I settled in to wait. In my research, I found that the initial review was supposed to occur within thirty (30) days and I set an alert to ensure that it indeed happened. It didn’t, no huge shocker there. I had to call and follow up and discovered that the initial review had never happened and my information had not been sent for review by a medical professional. That happened the day I called and within a week or so, the initial funds arrived.

The process was relatively painless and I’ve not been hit with the request to review the benefits I’m receiving, yet. One thing I discovered while working with foster children is that there are some times when you just need a lawyer who knows the lay of the land. Normally, the lawyers who assist people with applying for social security are paid a percentage of what they are able to obtain for the client. The lawyers who work with me through my non-profit have committed to handling at least one disability case (meaning the ones that go to court) per year for free for a stage IV patient. Super helpful in cases where the social security office isn’t doing the right thing.

Experimentation Update

I’ve now been on the experimental combination of Piqray (alpelisib) and Kisquali (ribociclib) for an entire 28 day cycle and a handful of days. I missed some doses in the first cycle of Kisquali when I was hospitalized and in my efforts to figure out the best time to take both. No PET yet to determine how well this combination is working but we have still been following my tumor markers.

For me, my doctor checks the tumor markers with a test called CA27-29. What this test measures is the amount of a type of protein called MUC1 in the blood. I don’t fully understand how the level of this protein increases when the Mets are getting more active and I do realize that many doctors don’t follow tumor markers because they aren’t always reliable for all patients. For me, though, they’ve been on point every time for the past 3 years so I do watch trends pretty closely.

Back in August of 2019, when I had two new mets in my bones, my tumor markers had been steadily rising. When I started Piqray, they came down super fast (a fact we celebrated!) and remained low while the initial PET showed a mixed response. The markers had been steadily rising over the months between PET #1 on Piqray and PET #2 when we saw that the Mets were getting more metabolically active and lighting up on the PET. Not the direction we want them to go, which has been the source of a lot of anxiety recently.

Now that we added Kisquali, we’ve hit a plateau. My tumor markers have been within one or two points of each test for the last two months or so. Usually this means that the medication is at least stopping the new growth; at the same time, the fact that the markers aren’t dropping is still some cause for concern. My med onc is not concerned enough to do a PET scan earlier than June, especially since we’re limiting my doctor/clinic/hospital visits as much as humanly possible. So, for now, we wait.

Have I said enough how much I HATE to wait!?

The biggest side effect I’ve been dealing with on this combination has been nausea. Piqray caused a low level nausea that I could manage. It literally made me feel pregnant so all the usual adjustments for pregnancy (I was nauseous all through both of my pregnancies) worked ok. Contrary to the 60 pounds I gained with each pregnancy (don’t judge!), I’ve lost about 30 pounds since August. That means I currently weigh around what I weighed when I was in middle school. Not exactly what I expected! My appetite has been affected as well as having to adjust to a modified keto diet since I’m still trying to stick with a mostly raw vegan diet.

When we added Kisquali, the nausea turned into vomiting and I’ve had some trouble managing it. I started taking Piqray in the morning and Kisquali at night and that seemed to help. I’ve also realized that the third week of Kisquali when the toxicity of the drug is at its highest was miserable. I was on Ibrance for 2 years (same class of medication) and I had forgotten about how that last week before the break being that bad. My family reminded me that it was and so we’re watching that a little closer.

Some silver linings of this social distancing thing in the midst of this experiment …

  1. I’m not as active first thing in the morning and I’ve not had to take as much pain medication. I’ve been able to nearly eliminate the oxy, which makes me so very happy! I still have a supply just in case and I’ve had to take it at times. I like being able to adjust some of my meds according to my activity level and how I’m feeling.
  2. In addition to not being as active, I’m not climbing the stairs as much. This has to do with homeschooling and all of that but also that my husband and mom have been around all day to remind me to take the chair lift or allow them to help. My knee pain is pretty much gone and my hip pain is so much better.
  3. Since I can’t go to our community pool to do my physical therapy exercises, I’ve been soaking in Epsom salts baths more often. The inflammation in my legs around the sites where the titanium rods were inserted are quite a bit better.
  4. I really like the telemedicine option. No rushing to get to appointments, long waits in the waiting rooms or frustration with support staff. I get on the application and immediately talk directly to my doctor. Have I mentioned how much I hate waiting!?
  5. Sweet family time.

Overall, I’d say that the experiment is going well. Challenging, definitely, but it will all be worth it when the PET in June shows a good response. Even if it doesn’t, my doctor and I have been talking about other options we have. I have a list of several clinics I’ll be consulting with as soon as travel bans are lifted. My doctor had already wanted me to fly up to Sloan Kettering to meet with a doctor she respects there. That’s on hold but I’ll make it happen when I can.

Despite all of the craziness of this quarantining and homeschooling and my husband working from home, I’ve found ways to engage with my communities. I’ve done some letter writing and I’ve sent many many cards out. I know more about Zoom and Microsoft Teams than I ever thought I would (and so do the kids!). Some days are more difficult than others, certainly; at the same time, we’re making the best of it and enjoying what we can. These are memories that we will never forget!!

Mental health and Metastatic Breast Cancer

Mental health and the ability to handle the emotional and psychological affects of living with a terminal disease is a tricky topic. There is still a general stigma in the community at large about mental health and seeking treatment for mental health struggles. I see this stigma far less within the metastatic breast cancer community since we’re all dealing with far more than a human can easily handle; at the same time, I think there is still pressure on patients to handle their struggles quietly or not obviously or not publicly.

I’m frankly horrified by this attitude because I think it means the people who need help don’t always feel comfortable seeking it out.

As most people who know me know, I’m up front and frank about those things that make my life easier. I sought out mental health support and have been on medication to deal with the overwhelming weight of my life and diagnosis very early on in my experience with cancer. It still does feel weird to lean on a professional for support since psychotropic medication and seeing a psychiatrist has literally never been part of my life until now. However, I recognized and still recognize that it is necessary and vital to my quality of life (QOL).

Quality of Life is one of those things that becomes a bit of a tug of war between patients and medical professionals, but I don’t think it has to be that way. Medical professionals have a very important job to do when it comes to the treatment of cancer. They are the professionals on the treatment. What I think is often missed is that we patients also bring expertise to the table — we are experts in our own bodies and in living with cancer. A successful doctor-patient relationship has to balance or harmonize both of these perspectives or something will get missed.

When it comes to mental health, I have found personally that some doctors are not quick to refer out a patient to someone. Mine certainly didn’t. I had to refer myself and get a recommendation from people I knew and trusted. I don’t think this was because of stigma, just that my doctor wasn’t looking at me as a whole person, in need of support in each facet of my life.

And that is what we need–support for each facet of our lives.

Why is this still not acknowledged widely? There are cancer centers who have moved towards a more integrated approach, involving doctors who specialize in just that, integrating care. Most have not and I know people who travel to get the care that they need when local centers don’t. Those of us who need care for a cancer diagnosis, terminal or not, need to be treated as an entire person and we need to be given options rather than the burden being placed on the patient to figure out what is offered.

During this time of greater stress and anxiety for everyone across the world, seeking out mental health support is a necessity, for those of us who are already handling so much and for everyone else who has been negatively affected by COVID-19. Reaching out and asking for help, seeking help, is so important right now when others may not see us regularly. Our support system may not be able to notice and intervene because of social distancing, so it becomes incumbent on us to ask for help.

How have you asked for help?

Medical Treatment during a Pandemic, Part II

My first post, Part I, was all about my admission to the hospital after I’d been tested for COVID-19 and how weird it was. Medical treatment during a pandemic is not fun at all. Impersonal medical facilities are even more so when everyone you encounter is scared of catching something from you, the patient. Plus, the lack of family members means that vulnerable patients are left alone, without advocates.

Just to be clear, I’m not suggesting that any of the amazing people working in the medical profession don’t care or don’t want to help, it’s just that they have so much on their plate already. For those of us who are stage IV, we have to access the health care system whether we really want to or not, so I notice different things.

One thing that jumped out at me from the beginning of my hospital experience is that no one that I dealt with had matching equipment/scrubs/etc. Each person was wearing a hodgepodge of personal protection equipment (PPE). One doctor had a makeshift shield over his mask that didn’t fit and kept sliding down to smoosh his nose. It’s a little difficult to maintain a respectful facial expression and tone when someone looks completely ridiculous.

One of the surgeons at my cancer center wrote an article about how oncology practices are affected by this pandemic. You can access the article here. She discusses the important question: “What does the Hippocratic oath mean during a pandemic?” This is a question that I think our entire country is grappling with and I haven’t heard any good answers that we patients can rely upon.

The New England Journal of Medicine published guidelines to be used when supplies become scare and must be rationed. The guidelines are meant to alleviate the burden of having to make such difficult decisions that result in life or death. I can’t imagine the burden that a medical professional who has sworn to do no harm will carry when so many are dying.

So what does all of this mean for me and my colleague who have MBC?

First of all, I’ve seen some recommendations from oncologists on Twitter not to reveal that those of us with stage IV are terminal. The thought process is that we patients should not volunteer such information when it would be used to categorize us to the wrong category, that of people too sick to be saved. I’m not sure what I think about this suggestion. The hospital where I seek out treatment is part of the network that includes my cancer center. I can’t escape the reality that my diagnosis is indeed terminal.

Secondly, watching how the people who were the sickest had the most difficult time communicating their wishes has me super concerned. Without family members close by, how do we communicate our wishes if we’re too sick to talk. I don’t have all the answers, but I do have a potential solution.

Road iDs have been developed for bikers and hikers who often find themselves in unfamiliar settings.

This metal piece will fit around the band of my Apple Watch. It has some demographic info and my emergency contacts on the front. On the back are codes that lead an emergency room worker or paramedic to go to a website where I can upload documents like my advance directives. This same tool comes as a bracelet or an anklet. Such a simple yet profound options to ensure that there is a chance my wishes would be followed if I can’t communicate.

I did test negative for COVID-19 and I’m thankful that I don’t have to deal with the symptoms at this point. My heart goes out to the families who have lost loved ones, to the health care workers on the front lines and all of us social distancing. This is a difficult time and life will likely look very very different on the other side of all this.

Grief and Love; Love and Grief

I’ve been staring at this blank screen for weeks. I want to write. I want, no, I need to write in order to get this grief out of my head/heart and into something more manageable. The fact that I’ve had a worrisome PET, that my new meds are proving complicated to handle, and the fact that the world has gone crazy … these I can handle, sorta.

The awful and wildly overwhelming grief that I need to get out is because my dear friend, Emily Garnett, has died. She took her last breaths on March 29, 2020 and I’ve not been able to fully breathe since.

I “met” Emily online in 2018 and stalked her until she invited me to be on her podcast. I don’t fangirl very often but the outpouring of love and grief at her passing reminded me that she has a lot of fans. We had such fun, laughing and sharing stories. I have two boys and her son and my youngest are probably the same person in different bodies. We bonded about that and how much we have in common, not the least of which was that we’d both been to law school, survived, and went on to use our law degrees in ways that fed our souls.

That was the beginning of many many conversations, so many late at night when insomnia hit us both. We collaborated on projects and had our own snarky exchanges that just hit the spot. She was the first person I told about what was going on with me medically (outside of my family, of course) and we exchanged info on doctors and trials and studies and how to help various people get their needs met. We both love cats and memes that have the word “fuck” in them and our text exchanges were full of those. I keep coming across things that she would love and that’s just another reminder that she’s gone.

I’m an introvert, which basically means that I get energy by being by myself. My husband and I joke sometimes about how awful I am at small talk. Like really awful. I am at my best in deep conversations with a few people or a defined role in a larger group.

That was not Emily. I was not surprised at all when one of the people posting on her timeline about her death was someone she met while taking the bar exam in 2013. In contrast, I didn’t talk to anyone when I took the bar exam. I was also not surprised when so many mutual friends eulogized her and talked about how she was their best friend. Emily was a true extrovert and her energy is part of what drew others to her and the others around her energized her.

Emily was amazing at making each person she was with feel as though that person is the most important person in the world to her. Others have talked about how the entire atmosphere changed when she walked in the room. Others have talked about how her death is like a sudden lack of oxygen in the world.

These are all true.

The first time I met Emily in real life was October of 2019 in DC where we attended the Metavivor Stampede, the METup Die-in, and we both read in the play, IV our lives. I treasure those memories. I will always treasure those memories, especially because there was little sleep and lots and lots of work, work that was worth every trial. The voice of Beth Caldwell in the play will always contain echoes of Emily to me.

When I was pregnant, I kept coming across the line … “having a child means that a part of your heart will always be walking around in someone else’s body.” I’ve definitely found that to be true with both of my boys. And while friendship is very different from having a child, a piece of my heart will always be with Emily.

And that grief, I know, is the price of love.

I love Emily. Not in a romantic way, but in a deeply significant part of my heart and soul. I knew, as we all do in the metastatic community, that since we were both terminal, our relationship would be cut short by death; one of us would die. And I wonder if that makes relationships like these so much more intense, poignant, meaningful. Maybe that’s it. Whatever the explanation, what I know is that her death is hard and it’s overwhelming and it hurts in the deepest part of me.

I’m tempted, at times like this, to pull away from the metastatic community. I’m tempted, at times like this, to protect my heart from being broken over and over. I’m tempted, at times like this, to not connect with other terminal patients, to withdraw. It is in the midst of this overwhelming grief that I am tempted to escape from the possibility of being hurt.

And then I remember how Emily poured into me, how she was always ready with a joke or a meme or an “omg, me too!” comment that just made it all easier and lighter. How she had so many plans that she just couldn’t finish. Her passion for life and her husband and her son and her community.

And I can’t withdraw.

Emily showed all of us how to be all in. She modeled it in so many ways. Her legacy is an example to follow, to celebrate, to emulate.

I love you, Emily, always, and I will never forget what you taught me.

At the conclusion of the METup Die in, October 2019
Tired and worn out from the festivities and about to head home, October 2019.
At the conclusion of the METup Die in with Laura, our editor at advancedbreastcancer.net, where we both write for the metastatic community, October, 2019.
The original cast of IV Our Lives, October 2019