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.
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.
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!!
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.
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.
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.
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.
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.
You have spent some time in the hospital, had a serious illness, and you receive excellent care, so you are able to come home. It takes a few days but you start feeling back to your normal. As you begin to exhale and get immersed in your life again, you receive a large bill.
Here’s an example of one that I received after a hospital stay:
After the initial reaction of astonishment and probably a small amount of panic, it’s time to figure out what to do. In this post, I will share my process and the applicable law in Florida to these issues. I am only licensed as an attorney in Florida but a quick google search should arm you with the applicable statutes in your state or feel free to contact me and I can walk you through it!
So, back to my process.
When I get a bill like this, I first look at my Explanations of Benefits (EOBs). These are the documents that I receive from my insurance company when they have paid a bill. EOBs are how we patients know the insurance company did something. I used to get everything in the mail and staple each EOB to the physical bill. This helped a LOT with organization when I was first diagnosed and overwhelmed. Now that I have a better handle on things, pretty much everything is electronic and saved in a folder for future review, if necessary. I then purge on a yearly basis.
Secondly, if there is an EOB, then that means the provider billed the insurance company and there is a response. If the response is that the provider is not covered, then the EOB will usually say that the entire or the majority of the bill is the patient’s responsibility. If there is no EOB, then the provider likely didn’t even bother to send the bill in. Once you know whether or not you have an EOB, then you can call your insurance company. I always call my insurance company to review bills before I call the provider and when they give me any answer, I make them tell me where in my insurance policy language is the authority for their position. Most of the time, I get a summary of the language that I then compare to the actual language. I don’t know who is writing these summaries but most of the ones I received have had at least one thing that is contradictory to my policy language.
Yes, I have most of the applicable parts of my policy highlighted, tagged and virtually memorized. It’s not necessary to memorize your coverage but when you have to review it as often as I have, it’s rather like a by product of familiarity. Knowing what your contract says is important.
I have Blue Cross Blue Shield of Alabama through my husband’s employment. Since his company is headquartered in Alabama, that’s the policy we have access to. So, for us, the bills flow through Florida Blue (aka Blue Cross Blue Shield of Florida) before they get to Alabama. This can get complicated but knowing this path of the bill can be helpful. For instance, the only way a provider is covered is if they are registered with Florida Blue, NOT BCBS of Alabama.
While I have private insurance, these steps apply to any public or federal benefits as well. I had the same conversations with Medicare for my father in law over the last decade or so that I have with my private insurance company and for nearly identical issues.
Third, once I have a handle on whether or not the bill is covered under my insurance and at what percentage, then I look at the mechanics of how the billed services were rendered. In the example I’m using with the bill above, the hospital sent out my bloodwork to the provider that sent me the bill. I wasn’t asked or consulted about where my bloodwork was sent. If they’d asked, I could have told them that the entity isn’t covered by BCBS. I know this because this is not the first time the same company has sent me a large bill, never billed my insurance company and then was aggressive at trying to collect funds I didn’t owe.
Fourth, I look to the Florida statutes to review my responsibility as a patient. In Florida, if a covered entity (meaning a hospital or clinic who is a covered provider on your insurance), then contracts with an individual or clinic who is not covered, then the patient isn’t responsible. It’s super simple, if the decision is not yours as to which provider or vendor is selected, then you don’t have to pay. However, if you do know or have a choice, then you may lose that protection. As of my last research, 42 states have some legislation that protects patients from getting these surprise bills where a patient has no way to know a bill will be sent. In Florida, if the entity knows that the patient does not have to pay and yet a bill is sent anyway, the entity is fined.
In my case, the non covered entity is quite well aware that they aren’t on my insurance. You can see from the bill above that they didn’t even bother to send the bill to my insurance company and I never received an EOB. Each time I call, the person answering the phone is well aware that my insurance doesn’t cover their services AND that I have no legal liability for the bill. The responses I’ve received have literally been along the lines of … “well, we send them out because some people just pay it” and “sometimes your insurance company will send you some money to cover a portion of the bill.”
I’ve reported this company every time they call and I’ve reported their predatory and illegal billing practices to my cancer center and hospital network. I am hopeful that they may lose business. I am quite sure that many people pay these bills even if that is financially difficult because they just don’t know not to.
The only way a predatory entity like Comprehensive Pathology Associates stays in business is because people pay the bills without knowing they don’t have to. There are options, though, and I know lawyers who take on these cases at no cost to the patient. Don’t pay a bill when you don’t owe money and ask for help with addressing surprise billing!