DENIED

When I was diagnosed with metastatic disease in 2013, my most significant worry was about progression of disease and the end of my life. Today, and over the last several years, I am living with stable disease. That stability has given me time to worry about those issues while also worrying about others as well. One of those “others” is my health insurance coverage.

The topic of healthcare and health insurance for Americans is a topic I wish I could avoid. It is a daunting subject of study full of political rock throwing and posturing done to persuade people that a certain plan will be best for a country with 324 million people. Getting as many people as possible to pay for an insurance plan allows for larger sums of money to be placed into a figurative pot that then can be used for those hopefully fewer members of that pot who are in need--that part is easy enough to understand. But the details of how it should be implemented, who the money should be distributed to, what dollar figure for premiums is actually affordable for the largest number of people, how to fund those that cannot contribute, and what health conditions and medicines insurance companies should cover makes for a complicated mess that is not easily agreed upon. 

The way I see it, conversations concerning healthcare and health insurance must not neglect how government agencies and private insurance companies will manage paying for every desire that people have in terms of the prevention and the treatment of illnesses. The main obstacle for everyone getting what they want from any system is money; it is finite. I wish there was an unlimited amount of it, but there is not. Because of that fact the inevitable yes's and the no's in the care of an individual's health are unavoidable. No matter how hard we wish it were so and no matter how much each of us may want to help the sick and want the government and insurance companies to pay for every person's illnesses endlessly simply isn't possible. Decisions to treat or not to treat happen every day. So, in determining where best to spend the available funds means that someone somewhere will be left with nothing but hope. Hope doesn’t have any purchasing power. That someone could be me. 

This post, though, isn't about the big picture of health insurance and healthcare in America. It is about my experience in it so far.

My health insurance is purchased through my husband’s employer. Every year his company negotiates a new contract with Blue Cross Blue Shield of North Carolina. So far, the changes have been minimal. The deductible has remained high causing financial woes for my family, but the benefits package has remained the same allowing me to receive the necessary drugs, surgeries, scans, genetic testing, and radiation needed to keep me alive. For that I am extremely grateful. With every change, I worry that a denial of coverage for some aspect or all of my treatment will come my way. On Friday, my worry became reality.

I received a large white envelope, and in that envelope I found words. Words that others have faced, but I had not until that day. There, throughout the first two pages, I read “. . . notice of an adverse benefit determination . . . declined to provide benefits . . . ”  I found that someone in the medical review department of my insurance company decided my current treatment drug “does not meet the definition of Medical Necessity found in the member’s benefit booklet.” Wow, so many words when one was all that was needed. The ugly one. The big, black, bold lettered one saying—

 DENIED!

And, I must let it be known, the denial is for a treatment that I have already had. That makes sense, right?

I knew what was coming as I read, but with all those extra words, for one hot second I thought maybe this wasn’t a denial notice. Yet, it was.  

Page two read with more words of denial: “. . . coverage of ado-tratuzumab emtansine (Kadcyla) is denied.” Further down, I read, “ado-tratuzumab emtansine is considered investigational when coverage criteria are not met.  . . . found insufficient peer-reviewed medical literature to show a beneficial effect on health outcomes compared to established alternatives. The member’s policy does not cover investigational services.”

Investigational? Kadcyla? What are they talking about? I have been on this drug for 3 years and 3 months.

I soon sent a message to the nurse navigator who works with me at the hospital where I receive treatment. She responded by letting me know she was contacting the people who will help me tackle this problem and get it appealed. Surprisingly, I felt calm that day believing the denial would be reversed. But, today, the heaviness I am feeling inside my chest caused by this denial further reinforces my ongoing fear that at any time when it comes to my treatment, someone will always be making decisions about it. Decisions about whether money should be spent on me or someone else.

How hard it is for me to accept that my existence is controlled by a disease and by the decisions of everyone connected to me. I mourn those lost days of which I believed I was in control of my living and my dying--oh, how naive. 

Until this issue is resolved, my treatment #57 of Kadcyla (TDM-1) has been put on hold. 

Breathe . . . I just need to . . .

Breathe.

I Want To Be Heard

We were riding the train in the Cincinnati airport after a long weekend of family tied together by people from long ago. My stop was terminal A, hers terminal B.

As my stop approached, the two of us standing beside each other holding onto individual poles preventing us from falling, my aunt looked at me and said, “I couldn’t read your blog.”

Before that moment, I assumed she had forgotten I had a blog. On our second full day together I learned that she did not understand stage IV breast cancer is terminal asking me, “So what is your diagnosis?” So, bringing up my blog at the very end of our time together did not exist on the list of things I expected her to say.

I quickly jumped into protection mode not wanting to hear any negatives about my writing. “It’s okay,” I said. “I was really depressed in the beginning. It isn’t so dark now.”

Because I was able to get to know her better over those few days, I know now she was not bringing to light any negatives about my blog. She brought it up to tell me she now understands why I have a blog.

The train stopped. Before I departed my aunt said, “I think you want to be heard.”

Nodding my head I said, “Yes, I think I do.”

We hugged goodbye. I departed the train giving more thought to what she had said, the doors closing behind me.

She is right. I do want to be heard. I want to be heard, but I want the people who are part of my life to want to hear me. I don’t want to force it upon them in conversation. I want them to take time out of their day to read what I write because they care about me even if it makes them uncomfortable.

I have long suspected that the very people I wanted to read my blog did not. Those family members were the people I targeted when I first began to write--along with a few friends. My expectations of what I think family should or should do or be to one another are often much higher than what reality actually gives me. This is proof of that.

Maybe I am asking too much. My want for people to read my blog so they understand my emotions connected to my death is perhaps more than they are willing or capable of doing. Breeching the subject can be highly emotional. It could cause me pain and pain for them as well. The conversation of death is often avoided because dipping your toes in it may cause a dam to break. Staying clear keeps everyone from drowning. There is a great need to protect against that. I get it.

On occasion I have slipped into a conversation with a family member about my disappointment that no one except my two oldest daughters read my blog. That little push has caused them to take a moment to let this part of my life into theirs. I might hear something small about it the next time I speak to them but after that, nothing.

I feel selfish feeling this way. There is nothing so special about my thoughts that must be read. But I do want to feel as if my thoughts and words matter to them. Then, maybe, once in a while, when they are telling me about their lives they might acknowledge that my world is different. One where I have to consider I might not be here next year while they get the luxury of planning their future years not aware as I am of a timeline with an endpoint in the not so distant future—statistically speaking. The two perspectives are vastly different.  

So yes, dammit, I do; I do want to be heard. I want people to know what I am going through. That I am scared, hurt, and full of pain, rage and self-pity for a disease I cannot control. And I am jealous, yes jealous, that the people in my life can pursue things that I will never be able to.

Yes. I want to be heard. As another scan approaches--June 26th-- my fears are enhanced. That day I must rise much too early in the morning and journey to a machine revealing my future is the day I need to scream into the universe because I don’t know what else to do. This blog lets me do that. I am screaming in this post. My life and my death are racing each other.

I need to give away my grief. Put it out there so I don’t feel alone trying to live as I do constantly having my death hovering over me. It never leaves my thoughts, how can it?

I carry cancer with me, everywhere. I carry the thought of dying, everywhere. When I am tired, my defenses are weakened and can easily reveal on my face my feelings if prompted by the right stimuli. When everyone around me is struggling to be heard about the things that are bothering them, I am struggling too to keep myself from letting loose and scattering all of me in front of them. I am losing so much; I am losing my life. I am not ready to die. There is so much I want to do.

My words strung together from thoughts in my head matter to me. Maybe I shouldn’t care so much that my loved ones hear them. But I do. They are my words expressing how I feel. Sometimes I just need validation they care. 

Somehow, I thought my loved ones would want to hear my pain and offer me soft words when I needed it. I was wrong about that.

We are all islands living among each other and not really stopping to listen to what the other needs to say. I too am guilty of forgetting to listen, but am trying to correct this mistake whenever I can. I think we all want to be heard and want our feelings to be important. 

So it is to my two now grown daughters, to a few friends who have let me know they read my blog, to those people I have never and will never meet, and maybe one day to all of my family members that I want to say thank you for giving me some of your time. Thank you for reading my blog and for listening. I do need to be heard by someone, anyone.

You are it.

The Importance of a Clean Home

Ah, a clean home . . . it feels so nice. The visual pleasure of looking at an environment that is orderly and as dirt free as possible does something to my brain. I feel more relaxed. More in control.

The fragrant smells that waft through my home whether from the Glade plug-in on the wall or from some cleaning product filling the air is quite pleasing to me. Take a trip down the laundry aisle of the grocery store and maybe you will see what I mean. Those scents on that aisle grab my attention sending me gracefully dancing down that aisle—mentally of course.

There is a long history of the cleanliness of a home being called “women’s work”. It is deeply embedded in many societies. This role--though, I am not a scholar on the subject--is tied to the fact that women are most often the caregivers of children. I am not opposed to women taking on this role in today’s society if they want to—obviously, since I chose to stay at home with my children; it is by far the best job I ever had, and I am immensely grateful that my husband brought home the necessary cash allowing me to do this work. But, when a woman works outside the home, viewpoints of who is responsible for the cleaning of the home need to change.

Through the years, I did my best to manage the daily operations of my home, but did not do it exceptionally well the more I was pulled away due to the activities of my children. There were also times I was paid for work outside my home but unfortunately there were consequences.

I cleaned a ballet school--my girls helped--and did basic maintenance for the building in trade so my children could attend classes. That same school paid me to make and alter costumes. I also received additional compensation to manage those costumes during several productions. Prior to my stage IV diagnosis, I juggled working several part-time jobs: one was in a daycare working in the classrooms when needed and helping with its afternoon operations; some days I worked in the office for the previously mentioned ballet school and after hours, three times a week, I cleaned each room of the daycare—these businesses were next to each other, thankfully; the most time-consuming job was my work as a merchandiser in several grocery stores because the paper work came home with me. All of this was done while still homeschooling my youngest and taking two of my older children to their daily academic classes away from home and then bringing them home later.

As determined to do-it-all as I was while working those jobs, after nine months of it I accepted the fact I had to drop one of them. Still, I continued to be away from home, a lot. Sure my home was dirty. Sure I was involved in dog rescue caring for several dogs including my own. And, sure, I had more to do than I ever could get done. But instead of someone offering to help or asking my husband to give me a helping hand, I was blind-sided with an attack on my mental state.

I discovered the sinister plot by a few of my family members during an interrogational conversation on the telephone one evening about how I was living and raising my youngest child. I knew nothing of anyone’s thoughts of me until that conversation. It was all quite bizarre. The next day my husband received a phone call. The person on the other end said it was imperative he come over. My husband left with no idea what was going on. When Greg returned home I discovered I apparently had . . . a hoarding disorder. My husband was told he needed to “fix me”. We completed the puzzle and realized my family members, who do not live in my home, had begun a covert operation against me. Instead of helping me, an intervention was in order.

It is true my house was dirty, cluttered with misplaced items, dishes in the sink with books and papers scattered on tables. It was also true my youngest –10 at the time--liked to sleep on the couch, and her bedroom was not painted in a favorable little-girl color because her bedroom had been a former home-office--this was apparently bad too. And, since our daughter kept getting strep throat, it must be from all those animals I had living with us. (Yeah, wow . . .) I was getting the sense that someone needed a hobby and had spent too much time watching episodes of cat-hording women with their 100 cats producing waste all over their living spaces. If this show has ever crossed your path then you know this show documents a family’s intervention in hopes the person, living quite differently than most of us, will return to the life that most people consider normal. To some people--not the people who lived with me--I had become one of those women.

On the surface it was laughable what I was hearing. But, the deeper issue was not. How could this be happening? I was a woman who got up in the morning, cared for my animals, secured care of my youngest child or took her with me, drove the other children to their classes, and spent the rest of the day spreading my time between all my jobs, getting home at night, finishing paperwork, cooking dinner, educating my child, and finally collapsing leaving dirty dishes in the sink, laundry unfolded in their baskets, waking up the next day to do it all over again or giving my best effort to try and catch up from being gone the day before.

Then a conversation occurred between me and another family member in a public place. Apparently, this small group of family members believed I needed to talk to someone. Maybe that someone could help me. (By someone this person meant a psychologist, or perhaps a psychiatrist.) This from someone who gave me a cartoon snipped from a daily paper years before saying “the cleaning can wait”.

It was official. I was under attack. All because of a dirty home.

That year we stayed home for Thanksgiving. By Christmas I received an apology from one individual, only because he didn’t want us to skip the family gathering at Christmastime. I accepted it because of my children, and darn it, I couldn’t not talk to them forever, they were family.

When my metastatic condition was made known, my clean house--or my not clean house--depending on your definition of clean—and my mental disorder were put away. I quit my jobs, not because of the family’s thoughts of me, but because of my disease. I had full support from my husband. He agreed I needed time to focus on getting my personal things in order.

Time went on, but I have never forgotten how hurt I was—still am. Last year, I received the most honest apology from one of those family members involved in my attack. She unfortunately had experienced with her own family the nightmare of someone blaming her for something untrue--unrelated to house cleaning, but something that made her see how unfair her family had been to me. Judgments made by spectators can in fact be wrong. I hate that it took something horrible to happen to her for her to see the horrible that had happened to me, but the apology and her acknowledgement that she was wrong was needed, by me.

So, today I still find my abdomen muscles tense when I think about that time in my life. My muscles are tensing now as I write. Each time I have a good scan, I have wondered if I should get a job just to help out with my medical bills even though that effort would hardly put a dent in them. I wonder too, if I went back to work now, would my living environment become chaotic again. And what will happen if my disease takes control? Will people consider my dirty house a risk to my child’s health because I am too sick to clean it? My environment in my home is the only thing I have any control of, at least for now. Do I continue my efforts to finish my list-of things-to-do-before-I-die while keeping my home in control? Or do I get a job?

People like me with metastatic cancer face many obstacles and employment is one of those. We are not always available 5 days a week from 9 to 5. Our life can change significantly quickly. Neuropathy can make standing for long hours difficult. Digestive issues can be embarrassing and can make us late to work. Other illnesses related to our cancer treatments, like my recurring urinary tract infections can cause missed work days. Any employer would have to be understanding. I realize these are excuses and could possibly sound whinny, but these are some of the reasons why getting a job is not an easy decision nor working in that job easily accomplished. I fear losing time spent with my youngest child. I fear, too, losing the one thing I can control in this life; a clean, organized home where I can hide from the world because cancer takes everything.

Get a job . . . I think that thought with every clean scan. I am struggling.

What would you do?