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My insurance company and I went back and forth for some time. All the information I gave them was “insufficient”. I was, literally, speaking with my case manager several times each week and I still wasn’t able to make them realize I needed the DIEP. This whole thing was taking an emotional toll on me. I was terrified that the longer I waited the more chance I had of getting cancer. I was also worried about taking time off from work. Being on surgical leave was going to be an enormous financial strain on the family. The constant fight with the insurance company was only making things so much worse. I knew in my soul that I was making the right decision, but the longer this fight took, the more I questioned what I was doing.

I ended up going in front of a “hearing”. My husband, an attorney, came with me to make sure I didn’t lose my cool (I do that). The fact that he’s an attorney was beneficial, for obvious reasons. We went in front of this board of insurance people, or whatever you want to call them. There was a nurse, a doctor, and a whole lot of other insurance professionals. I had prepared for this, though. I’m a nurse and I knew how to interpret all the research studies I had armed myself with. Not only that, I used to be a police officer. That gave me a lot of skill that actually helped me with this, particularly investigating the research results and presenting the information in the hearing. I had plenty of experience testifying in court and I’m not intimidated easily. All of the research results I brought with me compared TRAM vs. the DIEP in terms of core strength. I had a letter from my neurosurgeon, stating he would strongly recommend against anything that would further compromise my core strength. At this point, my herniated discs are under control, but without the abdominal support I could be in serious trouble.

I sat in front of these people, looked them each in the eye and laid it out. I gave them copies of each research study I found, discussed the pertinent sections, which I had highlighted, and moved on. I explained the choices they left me with. I could do as they said and get the TRAM. If I did, I would likely end up on disability, lose my career as an emergency nurse, sue them and my kids could choose whichever college they would like to attend. On the other hand, if they denied covering the costs for the DIEP, I could choose to save my back and my career, end up with cancer because they denied a needed surgery, sue them and my kids could choose whichever college they would like to attend. I was very matter of fact at the beginning. They weren’t going to change their minds based on my emotions. I gave them the facts, strong and supported. I saved the emotional stuff for the end. I told them that I watched my father slowly lose the parts of life that made him happy, that made him who he was. I went to restaurants to get him what he felt he might be able to eat, only to watch him have to push it away because he couldn’t force himself to eat. I watched him take his last breath; the memory of it still makes me stop breathing and then crumpled in the corner, unable to fathom my life without my father in it. I told these people who make decisions based upon what’s in front of them in black and white, that I would do whatever was in my power to prevent my children from having to go through that pain. I stood up, thanked them for their time and walked out. My husband stayed to shake their hands. I couldn’t bring myself to do that. I know my face was red, I was tearful and I was pissed that I had to go through all of this to save my life. It was about a week later that I was told I had the approval for the DIEP in Texas.

I won! I felt relieved and frightened at the same time. This was it. I had achieved what I fought for, now I had to truly prepare myself for the emotional impact of losing my breasts. Yes, these were the breasts that were likely to bring serious illness, if not death, but they were me. Even though I had implants for 10 years, they were still me. I had sensation in every part of my breast. It was my body. Now I was headed for a surgery that would remove my breasts and replace them with breast shaped (hopefully) flaps that would have no feeling at all. I was afraid of what I would feel about my body, about myself. I’ve never had a very high self esteem, particularly related to my appearance. In fact, this is something I have lacked so profoundly it has impacted other parts of my life. What if I felt even worse about myself? I was truly terrified. Of course, the alternative was unacceptable. I wanted to live and I’ll be damned if I let any of my own selfish thoughts and fears bring pain to my kids. You know, it’s so easy for me to think “this body is just a shell for your soul, it’s not who you are”, but I’m so far from enlightenment that those thoughts only carry me so far. I get scared. And so it went: back and forth in my mind. Ultimately, I sort of closed my eyes and plugged my nose and jumped.

I was thinking today how much I have changed since my surgery. I used to enjoy going out and doing things with my friends. It’s the party season now and I’m not much for partying at all anymore. Yes, I feel self conscious, but it’s more about the weight I’ve gained that the boob thing. I’ve probably put on 50 pounds in the past year-not all due to the surgery but a good part of it is. This was a surgery that took away a lot of mobility for a significant period of time. Not my appetite. That didn’t go anywhere. So, that’s the combination that led to the weight, no mobility with the same amount of food intake. Ugh. That’s not the only reason I don’t really want to do anything, though. I don’t feel THAT bad about myself. I just can’t put my finger on the rest of it. At any rate, I don’t really care about work or seeing people. The only thing I care about is spending time with my family. That’s all I want to do. It does bother me that I’m not as dedicated to my job as I was before. I used to have a real interest in making my department better. Now, I just want to go home as soon as I punch in.  Maybe as I ease out of this and get further out from surgery I’ll get some of my other interests back.  I know I will, because I miss them. It’s not like I don’t give a shit about anything anymore. I actually miss the way I used to feel about stuff. So I know it’ll come back. I just have more adjusting to do. This is where I get to feeling sorry for myself and I have to shake it off. Just when I get kinda dumpy something will bring clarity to my dingy brain. Unfortunately, some of those things are very sad.

Just the other night my husband and I got a call from some friends. Our boy plays hockey and we’ve made some very good friends over the years. One of the hockey dads called to give us some sad news. Another parent, who we hadn’t seen in some time, passed away on Christmas Eve. When we met her a few years ago, she was in remission from breast cancer. We knew that it had come back and missed her at recent hockey games. Her husband said she had become so weak and didn’t want others to see her like that, so she couldn’t come to any games. We really did miss her and she was in our thoughts. Hearing of her death was like a punch in the stomach, but the air also felt different, more dense maybe. My husband and I looked at each other with shock on our faces. We talked about what we were doing on Christmas Eve, while a friend of ours was dying. We knew what the other was thinking. We were thinking about her little boys missing their mama and about how hard this holiday would be for them for the rest of their lives. We knew one other thing, I had made the right decision.

I saw a genetic counselor about what my diagnosis meant. I had an 87% chance of getting breast cancer. The ovarian cancer risk didn’t scare me as much because I had already had a complete hysterectomy while my mother was still alive. I had ovarian cysts, endometriosis, anemia and one doozy of a family history. So, out it came. I still have a higher chance of ovarian cancer even without the ovaries, but it is significantly less. There are other cancers linked to my mutation, as well. Cancers like pancreatic, colon and melanoma. These are things I learned from the genetic counselor. I told them I planned to have a double mastectomy, but was still learning about options. I remember the doctor telling me that I can’t just remove everything that can give me cancer. I looked at him dead in the face and said, “nope, but I can get rid of the shit I don’t need”.

A big reason I wanted to have the mastectomies and reconstruction was because I had breast implants above the muscle for 10 years. That, alone, made me very nervous. I couldn’t feel a damn thing on a self breast exam. And the mammograms? Forget about it. All you can see is this glowing white orb of implant and a sliver of normal breast tissue. Too hard to determine any abnormalities there. Well, I would be lying if I said I wasn’t worried about what my emotional response would be to the absence of my breasts. It was difficult for me to adjust to the implants I had. I actually regretted them almost the entire time I had them. It was strange to have something so unnatural as a part of my body. It had a huge effect on my self esteem. Hah, and here I had convinced myself I needed them to improve my self esteem. So, yes, I was worried about how I would feel when they were gone and replaced by whatever method of reconstruction I should choose. I kept telling myself “they’re just boobs” and there was a huge chance those boobs would be the cause of me getting seriously, if not terminally, ill.

The surgery part of whatever I choice I would make didn’t really scare me. The anesthesia is the only part that gets me worked up-making sure the person in charge of my airway is on the ball. But, the hysterectomy/oophorectomy surgery was cake. No big deal. The hot flashes afterward…definitely a pain in the ass. But, hey, no periods. No ovarian cancer. I can put up with the regular sweats, red face/chest/arms, night sweats where I get literally soaked then freeze, then sweat again. Ugh. My only real gripe about the flashes is I can’t control when they happen. Living in Michigan, one can imagine a hot flash would be welcome now and then. But then, when I’m all bundled up to ward off the cold outside I end up with the biggest hot flashes that make me want to just rip everything off and roll in the snow. So, hot flashes aside, the uterus and ovaries are out without much of a second thought. I knew I could handle the surgery part of this battle. I just didn’t want more than one or two surgeries.

The decision had been made, now I had to figure out how they would be reconstructed. I found a wonderful website (the link is here on the page), FORCE, Facing Our Risk of Cancer Empowered. It’s an incredible resource and I was able to talk to others on the message boards about every possible question I had. I went back and forth between several different procedures for a couple of reasons. In all my research about what I was facing, I learned there are so many options for reconstruction. I was sure I didn’t want implants again, which is one option that involves having tissue expanders that have to be filled every week or two to make them a little bigger. They add a small amount of saline to the expanders each time so the skin can accommodate the implants when ready. That meant two surgeries, months apart. I also learned about options that would use my own tissue to make new breasts (they call them flaps). Frankly, I had plenty of belly flesh from having children, I thought it would make a nice size breast, even if they were a little smaller-I wouldn’t care. They’re just boobs. This one could be done immediately-at the same time of the mastectomy, which would mean only one very long surgery. That’s what I wanted, one surgery and using my own tissue to make my new breasts. Then there was another issue. I have herniated discs in my back. The only procedure that’s done like that where I live is called the TRAM flap. With the TRAM, they actually remove muscle from the abdomen when the vessels are harvested to supply blood to the new breasts (flaps). It’s an old surgery that’s been done for years. There are advancements, but no one in my town has the ambition, or even cares enough, to learn about it. No one does anything but the TRAM. This procedure was out of the question because of my back injury. My back is really fine because my abdomen keeps it all in check. I have occasional flare ups and pulls, but it’s really not bad at all. I just don’t want it to get worse. I would likely end up disabled if I did anything to remove stomach muscle. No TRAM for me.

I also found the DIEP procedure. It’s very similar to the TRAM, but they don’t remove/displace any abdominal muscle when they harvest the vessels. They make a perforation in muscle, using microsurgery, and tunnel the vessels up to the new flaps. A general surgeon works to remove the breast tissue while the plastic surgeon works on the abdomen, harvesting and shaping the tissue that would become breasts. Then the plastic surgeon goes to work making sure the flaps are in place and have proper blood supply. She also works to attach nerve endings in the hope some sensation will return. This is the one I needed. I had other choices, too. Spare the nipples or get rid of them? Spare the skin or get rid of it all? I knew I wanted to spare the skin because I wanted to avoid the skin expanders. I found that the best thing for me would be to get rid of the nipples, because the ducts to the nipple also have estrogen-cancer risk. If I was going to do this I was going to get rid of every risk I could. So I found the surgery I thought would fit best for me. I wanted the DIEP, skin sparing, nipple eliminating.

I had the full support of my family. My daughter Ali (17), and son Brennan (12), both knew what was going on. We discussed the genetic issues with them and the possibility of them being tested when they turn 18. If they are positive, they would both be at a much higher risk of breast, pancreatic, melanoma, among other cancers. Brennan would be at a higher risk of prostate cancer and Ali at a higher risk of ovarian cancer, as well.  At this time, they both plan to be tested. My husband gave his complete support the entire time. Now, not being a “boob guy”, he really didn’t care about the reconstruction part of it. Honestly, even if he were a “boob guy”, I think he would have been just as supportive. He saw how cancer destroyed my father, what it did to my mother when she was sick and what it did to the family after they died. I was trying to dodge a bullet and we were scared.

The search for a surgeon was difficult. Being a new type of procedure, there are only a handful of surgeons in the states who are experienced with it. I saw the surgeons my insurance company told me to see, and made calls to some others. No one here does the DIEP. I found a surgeon in Michigan, about an hour’s drive away, and met with her. She was wonderful and very easy to talk to. She listened. My only concern was that she was new to the DIEP. I was hoping for someone who had done a lot of them. I found out that she had trained with someone in Texas, someone who was one of the pioneers of the DIEP. After speaking with her office in Texas and making a trip to meet her, I decided to have the surgery with her. My insurance company, however, was not on board. They wanted me to have the TRAM because local surgeons in my insurance network perform those frequently. In spite of my documentation about herniated discs and not being able to sacrifice any core strength, they still insisted I stay in network. Well, anyone who knows me knows I like a challenge (some would say I like a good fight). Either way, I got ready to go after them.

Above you see a beautiful, aged photo of my mother (on the right), my Aunt Jean (on the left) and my Uncle Bill (cute little guy in the middle). They represent the beginning of many things for me. The obvious: my mother and my birth. The not so obvious: my “way cool” wild uncle who showed us what fun was and my aunt, lovely and silly showed me how fun it was to laugh. I still remember her cracking up, very loudly, while watching MASH. She’s a riot, my aunt. She and my daughter (when she was around 3 or 4) used to laugh incessantly together. One look from one to the other would set them both off in hysterics again. We even had to separate them at times, for our own sanity. It was beautiful. My entire upbringing occurred between those beginnings and the next, the unwelcome beginning: the diagnosis of a mutation to the BRCA1 gene.

I loved my family, though like the majority of families, we had issues. I was never the innocent one, I will admit. But many problems were so much bigger than I even knew at the time. We all blew in and out of each other’s lives, depending on what was going on, or who was mad about what. I never saw enough of my extended family, with the exception of two of my awesome cousins. The same sort of situation applied to my father’s side of the family, but this is focused on my mom’s side-the BRCA1 side. As a result of the way we all drifted away, then back, then away, my mother never really knew much about her family medical history. She had made a decision to withdraw from her parents, for various reasons, and didn’t know anything about her own aunts and grandmother’s health and illnesses. It wasn’t until my mother was diagnosed with ovarian cancer in 2001, and my Aunt Jean had done some genealogy studies, that we realized there was a frighteningly significant family history of ovarian and breast cancer on her father’s side of the family. My grandfather’s two sisters and his mother had all died of either breast or ovarian cancer. If that wasn’t enough, his mother’s mother and HER two sisters were afflicted as well. With the exception of one aunt, they all died of breast or ovarian cancer. My mother and my aunt were the only females left in that line of family.

Let me give a little background on my experience with cancer. In 1996, I watched my father lose his battle to cancer, a 2 year war that eventually took my strong, bear hugging, “I can fix anything” father away as a man who couldn’t talk or open his eyes. He couldn’t move his body. He was only skin and bone, quite literally. My father fought the disease with grace and incredible fortitude. He played rugby my entire life and after his surgery, he taped his PEG tube (the tube by which he received nutrition after his stomach was removed) to his side and played the game that was one of his greatest enjoyments. Of course, he made me swear not to tell my mother. He struggled and hung on to every bit of independence until he could no longer move without assistance. I was a police officer at the time and actually caught him driving his old pickup truck, knowing he was on an incredible amount of morphine. I escorted him home and lectured him (though I regret that lecture now). That was the last time he drove. It makes me cry to this day. I had been a single mother for some time and my daughter was so close to my father. He would see her first thing in the morning and last thing at night. He came over every morning to see his “Little”, that’s what he called my baby girl who was 6 when he died. She lost a father figure when he died. She held me as I sobbed when his body was being removed. She told me he felt better now. My baby girl, so strong and beautiful. Losing my father was my first true devastation. He was my best friend and I needed him. I was 26 years old and pregnant with my second child, my son who would never be able to experience the love of his Tata. That was the first time I broke. When I say “break”, I mean I was so completely broken inside. My soul, my brain, my heart, my gut, all empty and numb, yet I felt pain that I had never imagined. Everything was disconnected. Nothing worked.

My mother had never loved another man. My father’s death took so much out of her. She poured everything into work and never ventured into a social life again. She shut many things out of her life and focused only on her children, grandchildren and clients-she was an attorney. Then, in 2001 she was diagnosed with advanced ovarian cancer. This terrified her, as well as the rest of us. She had been having stomach pain that she dealt with, ignoring my urging, and that of my brother, to go to the emergency room. See, she felt (quite accurately in most cases) that the quality of medical care in Yuma, Arizona was less than safe. I will say I had my son there with a wonderful midwife and a very good emergency room physician is the one who actually found my mother’s cancer when the pain was so bad she actually went in. It was found on ultrasound. I was in nursing school in Michigan and my husband picked me up from class. The kids were with him and I knew something was wrong. The irony is we had just watched “Wit” in class and it was the anniversary of my father’s death. I was already an emotional mess. I got in the car and my husband told me my mother was sick. I went home to be with her as soon as I could. I remember going with her to her first chemotherapy session, after her surgery. It was awful to see the fear on her face and feel it radiating from her. She was the strongest woman I have ever known, like an Amazon. She was tall, beautiful, intimidating and incredibly intelligent (just one of the characteristics that made her so intimidating). Here she was, looking at a room full of very sick people, waiting for poison to be injected into her. Thankfully, she and my father had similar spirits. They were so very strong. She made it through chemo and into remission. She went back to work and things were getting better. She almost made it 5 years when her cancer came back. She had a second surgery and round of chemo and made it into a second remission. Now she was different, somehow. Afraid. Emotionally unpredictable. Things got difficult, especially with me being so far away in Michigan. We worked hard at staying close. Her last visit here was the best visit we ever had. What was really strange is that my aunt’s ex-husband, my Uncle Dave, was coming through town and stopped for a visit while my mom was here. We hadn’t seen him for many years. My mom cooked up a storm and we had an incredible time. She and I went to an antique mall and found some great things for my house. We had so much fun. That was in October. On December 7, 2007 she was killed in a car accident. My brother was in the car with her and was, thankfully, physically uninjured. His injuries came from having to watch our mother die and not be able to do anything to stop it.

My mother’s death destroyed me. I, literally, did not come out of my room for a very long time. I was just, simply, absent. I felt the full spectrum of emotions. There was no balance and I couldn’t get a grip on which way was up. I was lost. I didn’t go back to work for 6 months. I tried after a month, but I was a mess. I had no business being at work. It took me so long just to get to where I could go anywhere and even longer until I actually wanted to go anywhere. When I finally started to come out of my fog, I decided to get the genetic testing done. My mother and I had talked about doing it before she died. She was going to be “mapped” and I would have the test after. We didn’t get it done in time, so I decided to go ahead and do it. At that same time, my aunt was diagnosed with breast cancer. It was a no brainer then. I visited my aunt when she had her surgery (lumpectomy) and saw my uncles and cousins at the same time. It was a bittersweet reunion of sorts. I discovered that my uncle has had several melanoma removed. Hmmmm, another red flag. That cancer is linked to the BRCA mutation, as well. When the testing was done, it was no surprise that I was positive for the BRCA1 mutation. I was told that I had almost 90% chance of getting breast cancer. It was no surprise, yet it was devastating news. I felt like I couldn’t breathe. So many thoughts raced through my brain, how would I fight this? What could I do? I had to prevent my own children from feeling the pain I felt when my parents were sick. I knew that I would get rid of my breasts I just wasn’t sure how to go about it. I refused to play a hide and seek game with cancer. Not me. Not ever.