Friday, October 30, 2015


I titled this post "Life" because that's what I wanted to write about. Life can get in the way sometimes, and sometimes it's almost unnoticed. I mean we go about the motions, and if we're lucky it all keeps chugging along like a boat on a calm sea. But most of the time there are dips and swirls and merry-go-rounds that we learn to navigate as the years tick by. Maybe it's more faking it than being an expert, but it's all a part of the experience. I feel like some people handle life better than others. I wouldn't be included in that group, though. And it also seems like some people have a harder go of it than others. Like the cards they were dealt were kind of shitty to begin with. Their lives are not calm seas and cotton candy. They are weathering storm after storm.

That kind of life is what I've been dealing with.

Now I'm not trying to write a sob story or gain sympathy. In fact, this is cathartic, writing about troubles. It takes some balls to put it out here like this. I have no idea how this kind of post will be received, and I probably won't be advertising it. I may even end up hiding it at some point.

But today it is here.

I've always had health problems. Not giant, life-threatening health problems, usually, but I was frequently at the doctor as a kid and still am. So I go to my mammogram earlier this year and they see by my paperwork that I have a high family history of breast cancer. They offer a quick and easy genetic counseling session to rate my risk and I agree. The first stage is to answer some questions on paper. This netted me the highest risk they have. So now they encourage me to do a more thorough question and answer that will be plugged into some software. It tells me that my risk is something like 26% - again the highest this particular program will go. Now it's serious. Now they offer a DNA test.

This is where it gets hard.

My mother died at 52 from breast cancer that metastasized. She has two sisters. One of them had breast cancer two separate times; the first in her 30s. The other sister has had numerous lumpectomies and a nipple removed. I lost touch with my mother's family after she died in 1998. This is what I know of up to that point. I did find out that the aunt that had cancer twice died a few months ago. I have to wonder if she had some other cancer in the end.

I was told about a way to protect myself back in 1998 after mom died. They told me I could start taking Tamoxifen and have a radical mastectomy, after I had children and breast fed them. I had no children then and didn't seriously consider this at that time. This was overwhelming, but I kept it in the back of my head.

Two years ago I faced my fear and tried to have the DNA test only to find out my insurance company wouldn't pay and I didn't have the thousands of dollars to cover it. That left me in a dark and angry place. Now I was looking into that same black cave.

I agreed to the DNA test and sat in a chair as they opened a fresh test kit. I swished Scope around my mouth for a set amount of time and spit it out into a jar over and over until I gave them the required amount. A week later I got a call from the lab that processes the test. My insurance wasn't paying. Again.

I sat in my bathroom after that call and had a bit of a breakdown. I'm a mother of three children. They are 6, 8 and 15. They need me and they will continue to need me for many more years. I just turned 41. That's only 11 years from the time my mom died.

That wasn't long enough.

Without giving myself enough time to doubt this I called my insurance company. I told my story, I cried, and I opened myself to them. The lady that answered my call just happened to be someone who cared. She went to bat for me and big time. She fought the company that paid her and she didn't stop until she got an approval. She told me that she wanted me to live for my children.

Many more phone calls back and forth between the lab and the insurance company continued for a couple of weeks. The DNA would be viable for 30 days. On the 29th day I got a call from the lab and was told they got the approval. My DNA would be tested.

About one week later I got another call. This one was from the local facility that did the test. They left me a voicemail that I got as I changed classes on campus. They wanted me to come in to their office to discuss the test results with a nurse and a radiologist.

I knew this wasn't good.

I found out I am positive for BRCA1. This is a breast and ovarian cancer gene. We suspected that it came from my mother's side of the family, given the history. My cancer risk was 87%. That's way too close to 100 for me.

I quickly found out that when you are diagnosed with a cancer gene you get sent to a lot of doctors. A lot.

Genetic counselors, surgeons, gynecologists, oncologists, plastic surgeons, nutritionists, menopause specialists, you name it. And because I have a connective tissue disorder, namely Ehlers-Danlos, along with other significant health problems, I wouldn't be able to go with a team of local doctors for the surgery. No one had worked with, or mostly even heard of Ehlers-Danlos. I would have to go to a bigger hub. The surgery would include a bilateral mastectomy, reconstruction and ovarian removal. I was given a few options, but I wasn't a candidate for the drugs because I have blood clotting disorders. I wasn't able to go with the monitor it every six months with a mammogram/breast MRI rotation because my vertigo doesn't allow me to lay flat back for the tests, and I didn't want to sit back and wait like a ticking time bomb. The other option was the radical surgery option. Once I remove the ovaries and the breasts, my risk is cut by 90%. NINETY percent. You can't deny those numbers. It was a no brainer.

Everything happens fast when you find out something like this. It was the first week of April when I got the diagnosis. In June I was going four hours away to Vanderbilt University Hospital to meet with a team of surgeons. An oncologist surgeon would do the mastectomy while a gynecologist would remove the ovaries, leaving a plastic surgeon to do the reconstruction. All three would work together on a 6+ hour surgery, I would stay in the hospital for one night, then I would be on my merry way home with a lovely 4 hour drive ahead of me.

My surgery was on July 28.

It went ok, and I had severe vertigo as soon as I woke up that lasted over 12 hours. My pain was unreal. It hurt to breathe. I had been cut on from my shoulders to my groin. My chest was one large bandage and I was being held together by some hideous and ridiculous surgical bra. I had 4 drains, 2 on each side, that came out from between some ribs and hung about 2 feet outside of my body. They had to be stripped and drained at least twice a day. Thank goodness for my 15 year old daughter, who did all of my after care because my husband is crazy squeamish.

I wasn't able to tolerate the narcotics because of my vertigo and they upset my stomach, so I was left taking Advil. Regular old Advil. I did that for a week until I was told that nope I couldnt' take that because I was already on blood thinner shots in my stomach daily to keep from having a blood clot. That meant that all I could take was Tylenol. Oh, but I can have the extra strength kind they said. They did nothing. I cried.

So I went without.  

Three days after surgery I started having hot flashes and didn't know at first what they were. I would cry out of nowhere, and I mean hard crying. The kind where you make noises. I wasn't depressed, I was just crying.

This was menopause.

The gynecolost told me at my post-op visit that women who have their ovaries removed and cannot take hormone replacement therapy go into menopause fast and furious. She wasn't kidding.

Now I forgot things. I was always forgetful, but now I have no memory of certain things. It's like they've been erased. I also can't multitask. At all. It's like that part of my brain has been turned off.

There were some complications afterward with the reconstruction, but nothing too bad. I was given expanders that were sandwiched between the chest muscle. I would have to go back every week at first to get saline injections that would stretch the muscles and my chest, expanding my breasts outward. We had to take it slow and do a little at a time because my ribs were dislocating and my spine and shoulders couldn't take it. Ehlers.

In the middle of this I find out my thyroid is going nuts, and I was diagnosed with another connective tissue disorder on top of the Ehlers. Maybe even lupus. Who knows at this point.

I am overwhelmed and I stopped talking on Twitter, my form of social media. I haven't really written since the surgery until this post. I guess you can tell because it's ended up being so long. Sorry guys. I guess I needed to talk after all.

I wanted to write this before November because October is breast cancer awareness month. I felt I had an obligation to do so. I don't know how long I will keep this post up, and I will be amazed if anyone makes it to the end. Thank you, if you do. It means a lot to me.

This is my life.

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