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EIGHT DAYS LEFT

EIGHT DAYS LEFT

“Do you know the codes they are using?” the woman at Blue Cross asked me like this was a perfectly normal question. The only reason I was even familiar with the term, ‘codes’ is because my partner and therapist friends often talk about the coding (that is really labeling) of the various issues their clients have. Mixed anxiety and depressive mood? F43.23. Major depressive disorder? F32.3.

These codes are so that my therapist friends can get reimbursed. Insurance companies require every single reimbursement requirement to have a code, so when she asked me as matter of factly as she did, I wasn’t as surprised if I hadn’t know previously.

“I’m sorry, I don’t know them off the top of my head,” (you fucking idiot, I have breast cancer and am getting a double mastectomy, isn’t that the fucking code, dumbass?, just kidding, breathe… ) I was calling because I had just read the cover to cover packet I received from the plastic surgeon on what to expect and what to do to prepare for the upcoming seven hour surgery.

One of the lines in the twenty five page informed consent forms read:

“Depending on whether the cost of surgery is covered by an insurance plan( I think it is, hence the phone call) you will be responsible for necessary copayments, deductibles, and charges not covered. The fees charged for this procedure do not include any potential future costs…. Additional costs may occur should complications develop from the surgery. Secondary surgery…. charges involved with revision surgery will also be your responsibility.”

Because I am a responsible and self proclaimed self advocate for my health, I decided to give my insurance company a call. This is how we arrived at the code discussion that my very kind (not a fucking idiot as my previous fantasy conversation implied) woman on the phone discussed.

“I can call your doctors and ask for the codes they will be using and let you know,” Nicole said. “Great,” I said. After giving her the phone numbers of my breast surgeon and my plastic surgeon, I was placed on hold and waited. There is lots of waiting when you are in bed with the health care world. After about five minutes she victoriously came back on the line with the codes.

“19357 or 19361 and 19303 or 19305 are the codes, but they are not sure which ones they will be using yet so you can call back when you know and I can let you know.”

“Can you tell me what those codes stand for?” I asked as calmly as I could muster because seriously does anyone besides me see the absurdity in this conversation yet?

Pause. Silence. “Well, it will take me awhile to put these codes through and get the diagnosis and our call volume is extremely high right now so I am not sure how long this will take, but I can look it up when I have time and put it in your notes so when you call back, you can finish where we left off. Would you like the reference number?”

You mean to tell me there is not a search bar on her computer where she could easily and effortlessly enter the codes one by one and have it spew out the answer? Holy hell. I could be using this precious time in the week before this traumatic life changing experience to meditate or sit in my pretty garden and look for cardinals.

I could feel my heart starting to beat a little faster and rather than leave a trail, I thanked her for her time and assured her I would call her back. I didn’t. Not yet anyway, maybe next week.

My doctor has assured me that all of this would be covered, but I am sure Blue Cross doesn’t write that check happily. I saw the bill from my first biopsy which lasted about forty five minutes start to finish and it was three thousand dollars. 3000 DOLLARS and they didn’t even get the spot confirming the cancer that my second biopsy confirmed. I am going to be in presurgery for two hours, “arrive two hours before surgery time” (which is unknown as of today because they aren’t required to tell you the time until 5 pm the previous day) (yes, laugh here). The surgery is six and a half hours, let’s just say seven, then recovery, then two nights in the hospital. I can’t even imagine what this bill will be. The funny thing about it is it is not like they have a menu of services with all costs listed up front so you know what your financial responsibilities are ahead of time.

I own a business that provides services and as I go through this whirlwind experience, I fantasize about not having a price list when our clients come in and then after we provide the service we let them know the cost. Probably wouldn’t have a business. (No worries clients out there, I believe in up front and best business practices, but you know this). So despite the amazing wisdom of my doctor, she and he won’t be the ones responsible for the non-covered items, I had decided to be proactive and call my insurance company.

After that interesting conversation, I reflected back on my father. He was a rebel with insurance. My father was still in liberal land in his brain, (he voted for Obama,) As a matter of fact, he bought a one hundred acre ATV campground in the Northern Great Woods of New Hampshire, Strafford, NH to be exact, partly because he didn’t like the mandate of Massachusetts insurance having no idea that the president he voted for instead of John Mccain would be federally mandating health care with the Affordable Care Act. My liberal family lost him to the other side (aka Fox) after that and he went on a tear discovering his new best friend, Glenn Beck.

He didn’t like anyone mandating anything and he wasn’t 65 yet so if he had any health issues he paid cash. He would actually go into a doctor’s office and ask what the charge of the service would be. Once he had that information, he would follow up with the “Is that the price if I pay cash?” question. He used to crack up at the way the receptionist would respond. Often the actual doctor would come out and discuss this with him. I bet.

Cataracts? 3000. “How much if I pay cash?” he would ask with a straight face. When he sprained his wrist and went to the doctor finally after deciding it wouldn’t magically self heal, he was billed. The doctor had put some type of contraption around his wrist at the end of the appointment. When he was in Walmart, he saw the same exact contraption and bought it for something like 12.95. When he received the bill, as usual he analyzed it and noticed that the same contraption was billed at something like 129.95. Yep, you guessed it. He marched right back to the doctor, contraption in hand, receipt and contraption from Walmart in the other hand and demanded a refund on the bill. He got it. Self advocacy,? This is where I got it from. My father got it from his father. It may seem like it is about the money. It partly is, but really, it is about the principal of the thing. The ‘what’s right thing.’ He thought the demise of the medical world is that we all just stopped asking for the price of things. We became totally dependent on insurance providing coverage for every single appointment and this was the downfall of healthcare.

I always wanted my father to write a book about how he dealt with no insurance by choice, though of course he was educated and had the means to pay. He also waited too long to go to doctors when he was really sick. Ironically, when he turned 65 and could finally happily reap the rewards of Medicare, he was diagnosed with cancer and left this life on the government’s free ride. He probably looked at that as Justice. He died 2 months shy of 67. He didn’t know he had the BRCH2 gene when he died and he didn’t get to see the current political climate through the eyes of his recently turned Libertarian glasses. I can only imagine. what those conversations would have been like.

My father left his rebellious attitude about the medical profession in me. This was one of his many legacies I have in my soul. He was only twenty years older than me and parented in a non parent style of, “You’ll figure it out.” For a fifteen year old girl living on a small island populated by 3000 people in the off season, this style of parenting was probably not a great approach, but the fact that I turned out the way I did, I think gave my father a sense of self righteousness validating his style. I don’t think he really understood that behind the scenes was a support system of two aunts, two sets of grandparents that were permanent fixtures in my upbringing.

They were the voices in my head when I would inevitably take advantage of the freedoms my rebel father would grant me, not my father’s. There was no voice. His voice started to show up in me when my brother was diagnosed in 1994. His voice has gotten louder since his death 6 years ago. He died a week before I moved out of my house and my twenty year marriage and his rebel wisdom is with me every time I walk into a hospital, I go to an appointment and I get a bill in the mail. Because of his voice, I question everything, I research, I ask, I challenge. I have made so many observations about our healthcare system, that I could probably write a book.

I remember after my last radiation appointment, I had my oncology appointment and my partner and I went in with our list of questions about the aromatase inhibitor she assumed I would be taking. This drug had serious side effects (vaginal dryness, low sex drive, bone density loss, hair thinning to name a few, I don’t know about you, but recurring cancer almost seemed like a better option; be careful what you wish for) and I was being asked to blindly take it for five years. It was her first day back from maternity leave and I am sure the appointment was scheduled for five minutes because she had already called in the prescription to the pharmacy. I also think we may have been her first appointment of the day. After forty five minutes of questions, that probably made her run late all day, I wasn’t convinced that the side effects outweighed the benefits. We left unconvinced and I made an appointment with someone in Boston to plead my case of why I didn’t want to take it. Besides the side effects, I didn’t want to get sucked into the pharma evil empire. All I could think about was the side effects would need more follow up pharmaceuticals and then “they” have you. I know it sounds kind of conspiracy theorist, but I have to remind myself constantly that this whole shebang has the underlying “for profit” theme throughout and I am eternally skeptical. It never occurred to the first oncologist that I wouldn’t be considering taking this drug.

This whole experience for me, surprising to many is not first and foremost survival. I don’t have a death wish by any means. I love life. I love my life, but I worship my QUALITY OF LIFE. I watched two of my most beloved people get diagnosed and follow the hope in a jar that so much of the world of cancer promotes. I like sex, (actually I love sex,) I like a moist vagina, (love that one too) I love my hair, and I love my strong bones that I pay dearly for with my boutique boot camp gym memberships and my frequent trips to Whole Foods. I have lived the life I have by the choices I have made and continue to make.

I always advise women who are getting ready to open their own business to first and foremost think about their objective. This is the guiding light that will serve all decisions in their entrepreneurial journey. Mine was this and still is.

“To have my business run efficiently without my physical presence.”

The way I have lived my life is because of this guiding principal and it has served me especially well when my father was diagnosed, when my grandmother died, when my grandfather had a stroke and when I was diagnosed because it gave me the freedom to travel, to care and to self care. It still does.

I know that we have caught this early (again) and that breasts are not arms and legs. I know that I am not living in Syria trying to escape or a woman who has to worry about getting raped and victimized in front of my family in the Congo. (yes these thoughts enter my mind in my times of darkness and feeling sorry for myself) I think it is human nature to minimize the big picture so you can pull up those proverbial boot straps and move through. But my first and foremost thought is QUALITY OF LIFE. Surgeries change this. The unknown changes this. This is where I struggle.

As my boyfriend always says, “No one gets out alive.” My experience with the people I love is that they didn’t and as they didn’t they lost their quality of life. This is what is embedded in my memory pattern and as pragmatic as I am, I see them, I see their suffering. I see their hope and their joys diminished. This is not me, I know, but it could be and that is what I struggle with.

There is my darkness for the day. Now I will go look for the cardinals.


My father before cancer at his beloved campground with my son, his firstborn grandson.

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