Wednesday, September 9, 2015

Two years later..

More than two years have gone by since my hysterectomy. I'd like to say it was a breeze, mostly it was, but there were definitely some darker days. I had to get to know the new me, and I had to let go of a lot of opinions I once had regarding medication. I previously had taken pride on not 'needing' any sort of medications to function, but this new me most certainly did. FINALLY, I now feel like I have come out on the other side.
   
This month marks three years since I started this journey. It will never be over, but I will forever be grateful. I was given the chance to be proactive with my health, and take advantage of the amazing knowledge that science and medicine provide. Medicine is constantly evolving and hopefully improving. I am committed to always doing what I can to better my odds, and my loved ones' odds here on earth.
   
Not a day goes by that I don't look at my kiddos and wonder if I have cursed them with my faulty gene. I just hope and pray, EVERY DAY, that a cure for cancer is found.

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Post opp & menopausal..

Many things were different as I went into this surgery date. Mainly, I wasn't at all nervous. Scared of what I might become emotionally, but not at all scared of the physical pain. Both of my doctors assured me that recovery would be 'a breeze,' so I was more than ready to wake up on the other side of this.

My last memory before surgery was waiting in the little holding area in the hospital bed. Once again embarrassed to be seen in my glasses, but moved by so many kind words from nurses and staff. I'm not sure if people were chatting about my medical situation or if they read it on my file, but it seemed as if everyone knew why I was there. People were coming up to me telling me what a brave thing I was doing, how smart I was, etc. I just kept telling them how happy I was to get rid of the expanders. Both of my doctors came in for our debrief, then they had 'words' outside of my curtain. Each of them wanted to operate first. My plastic surgeon wanted his part done first because the implants needed to be sterile and a variety of other reasons. My OBGYN wanted to go first because the hysterectomy was going to be done laparoscopically on the Davinci robot and I would need to be upside down.  She was concerned that would cause the implants to shift. (I could have lived the rest of my life without the knowledge of being upside down on a robot in front of other people..) I remember seeing them in a heated discussion about this, and then I woke up.

I don't remember being in much pain at all. I was required to stay over night (because of the hysterectomy), so I geared up for a somewhat relaxing evening and day away from my kiddos while being taken care of in the hospital. I know, not much of a vacation but it was a break, none the less. I was on some heavy pain meds that kept causing me to fall asleep, so I gradually asked to be taken off and switched to something less potent. I was up, walking around, chatting with the nurses and feeling much better than I anticpated. My chest was bandaged up, so I had not a clue what the new me would look like. I know it felt a lot better than my expanders, so I figured it was a success. I had five tiny incisions from my hysterectomy, none of which were painful.
   
My OBGYN thought it best to immediately start me on a bio-identical estrogen gel, Estrogel. It is a clear, natural, plant-based cream that I rub on my leg, arm or stomach daily. I had researched the heck out of post-hysterectomy HRT, and we both came to the conclusion that this was my best option. I didn't want to go without an estrogen supplement, as other serious health risks can come from that. We decided I should try this for awhile and see how it goes. Ideally, I will feel great, and eventually come off of the estrogen at a more 'menopausal' age. I started using this in the hospital the day after my surgery. (More than two years later I'm still using it.)
   
I went home the next day, feeling great and very hopeful that I would be back to normal quickly. I was able to check out my new chest a few days later and was pleased with the outcome. I opted for a high-profile silicon implant. It was my best option for a natural looking D cup. I put complete trust in my plastic surgeon, as I had decided anything would be better than the expanders. I couldn't have cared less how many CC's the implants were, just as long as it looked good. I thought they looked great!
   
I was feeling great emotionally as well. In fact, I was feeling more level-headed than I had in a long time..not sure what that said about me prior to hysterectomy, but I'd take it. I would have the occasional hot flash, but overall I couldn't (and wouldn't) complain. My crazy journey was over and I was more than ready to move on!

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Wednesday, August 12, 2015

The Fills..

I wasn't sure why I was even needing the muscle relaxers at this point. Then I had my first saline fill.

One thing that happens after this surgery is the loss of feeling in your chest. I had to remind myself of that when the nurse came at me with a gigantic, and I mean gigantic syringe. I couldn't image NOT feeling a needle as big as the one she held. I must have said as much, so we took a step back and she walked me through the process.

They planned to fill only 20 cc's - 30 cc's per side each time, until we reached the desired breast size. My chest certainly wasn't flat after surgery. The expanders had between 100-200 cc's already. We were aiming for around 500 (a full C to D cup). Then we would schedule the 'swap out' surgery for 6 weeks after the last fill and replace the expanders with implants. I was highly motivated to complete this part of the process and get back on the operating table. In fact, I asked her to put me on the fast track. Put as much in as possible to make this entire process go by much quicker.

A tiny magnet was used to find the port of each expander. (It was generally at the center of each breast every time.) She would mark the spot with a dot, then begin the fill. Oddly enough, the actual process of adding saline didn't hurt at all. I had no feeling, so I didn't feel the needle. Just pressure, lots of pressure. When I would sit up it was a different story.

Each and every time I had a fill, the muscles in my chest and back would go into complete spasms. Sometimes it was very very painful. I would be back on my pillows, with numerous heating pads under my back for days. Other times I would be fine, then my muscles would spasm and I would freeze and be brought to my knees in pain. It never lasted too long, but it was always enough to have me counting down the days for when I could jump back onto the operating table. I adjusted to this phase knowing the pain was temporary. I would end up canceling all plans when I did have a fill, and I quickly learned to go right home and get in bed afterwards.

Other than a little down time around a fill, life was quickly back to normal. I am sure that had I not been hit with the flu (or whatever it was), I would have been at 90% around the 4 week mark. Instead I was down for six weeks. After that though, I was driving, chasing my kids, cooking, doing laundry, everything I normally do. The only things different were that my workouts were put on hold, I had to sleep on my back, and I was no longer wearing a bra. I would tire out a lot quicker than normal, so I needed to take it somewhat easy. I certainly missed working out but it was important to me that my kiddos not have their lives disrupted too much. I had already spent enough time away from them, and my doctor appointments took time away as well. I also didn't want them fearful that I was sick or in any kind of danger. I made it a point to do as much as I could without over doing it.

My mom and I both were going through this same process together, while in different states. We were also having two very different experiences. Her ports were located a few inches below her armpits. While this process was painful to me, it was excruciating for her. We aren't sure exactly why things were so different for us, but they were. Maybe it was the port location, our age differences, who knows. What we do know was that it was a much more frustrating, lengthy and more painful process for my mom.

I can't remember the exact number of fills I had, but I do remember that both sides were not filled to the exact same number of cc's. I think that was done for appearance sake, but the variation was so small, it really didn't matter. It would be easy during this process to just call it and settle for a smaller chest size. I had to talk myself out of settling for a smaller size many times. I was so ready to have this over with. I wasn't able to wear a bra and my chest looked and felt both horrible and bizarre. It looked so strange that I either wore a vest, blazer or scarf every day over my shirts. Luckily it was winter, so I had the benefit of layers. I wasn't aiming for a gigantic chest, I just wanted to go back to the size I had (I was a D cup). The option to go bigger is definitely there if you so choose..but I certainly did not.

My last fill was sometime late February /early March of 2013. I was beyond thrilled. While I would miss my weekly (sometimes every other week) appointments with Dr. Robbins and his staff, it was time to put this journey to an end. His staff quickly coordinated a surgery time with my Obgyn. I was going to have the implant swap out surgery and a full hysterectomy at the same time. One doctor would operate then the next would begin once the first surgery was complete. Both doctors assured me that their portion would be a piece of cake. That was music to my ears. I was ready.

I don't remember what my chest looked like upon my last fill, but I do know that I put a lot of trust in my plastic surgeon. There were times leading up to the surgery that I questioned how the mess in my chest was ever going to turn out to appear 'pretty.' It was lopsided, uneven and hard as a rock. Not to mention the bright pink scars running along the sides. It was also a lot smaller than I wanted my final cup size to be. I was trusting it would turn out well, but I was extremely doubtful. I kept telling myself the bright side: at least I wouldn't have to really worry about breast cancer AND I wouldn't need a fill again.

Once my surgery date was set, I tried to get my family organized and ready for a few more weeks of downtime from me. I was over the fear of my initial wake up from surgery, and had been more than convinced that BOTH of my surgeries would be a breeze. Drains weren't even on my radar, so that element of this equation was removed as well. I am somewhat embarrassed to admit my biggest fears, but here we go....I was terrified that my hysterectomy would cause such a hormonal mess that I would gain weight. I was scared of feeling, acting and looking ugly. I have heard such horror stories of menopause that I was beginning to fear the person I would become. I reached out to the few women I knew who experienced early menopause. I once again did as much research as possible, then resigned myself to the fact what will be, will be. I would deal with the new me once we both resurfaced on the other side of surgery.

If you are questioning my hysterectomy, remember, BRCA1 also comes with a more than 50% chance that you will develop ovarian cancer near or after the age of 40. Once you hit 40, your percentage goes even higher. My husband and I had four beautiful children and we were very confident that our newborn baby days were over. I know this decision is different for each and every woman. There is no right or wrong choice but only a choice that is right for you. My Dr. and I were convinced and more than confident that my complete reproductive system needed to go. She could have attempted a partial hysterectomy, monitored me over the years, etc, but that route wasn't for me. Every part of the reproductive system is somewhat interconnected to the ovaries. They were the problem here. I wasn't willing to remove just the ovaries and have any chance that bad cells were somewhere in there lingering and waiting to strike.


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Monday, August 3, 2015

Recovering at home..

Looking back, the best thing I did to prepare for surgery was to purchase a wedge pillow system. I went to a local 'Relax the Back' franchise and found their Contour Wedge System. (http://www.relaxtheback.com/purefit-adjustable-wedge-system.html) It wasn't cheap (around $250), but it was more than worth every penny. (I used it for at least 2 months, and again after my second surgery) It was amazing. All four pieces of it. I quickly settled into my new pillow heaven in bed. I even celebrated my 35th birthday the next day in that pillow paradise.

My stepmom, Nina, was such a blessing. She is a former nurse, so she quickly reprised the role for me. She was there with my medications, cleaning my drains, monitoring my temperature, cleaning my incisions and taking care of my kiddos. She and my Dad made sure they did every single thing they could to help Jamie with the kiddos, with me, and with anything else that came up. My friends were such a huge support as well. From the day I came home through the entire month of Janurary, someone brought my family dinner each evening.

I was able to take a shower the day after I came home. I had a fabric headband in my hair, so I pulled it down around my neck, and safety pinned my drains to it. (I carried the drains around for three weeks like that, or pinned to the inside of a zip-up hoodie.) I wasn't really able to do anything more than stand in the shower, but it made me feel so much better. Washing and styling my hair was impossible the first couple of weeks. Forget shaving. I truly was at a loss as to how I was ever going to shave my underarms again.

At the insistence of my breast surgeon, I had a few lymph nodes removed. I was extremely hesitant about this, as I'd heard horror stories about what could go wrong. She believed it was the safest thing to do, so I complied. Should cancer come back in my pathology reports, doing the node removal and biopsy would pinpoint the location and if it had spread. Looking back, I'm almost embarrassed how much doing this worried me and consumed my thoughts. It was a non-issue, but I did do some exercises in the shower to help with the healing and to prevent lymphedema. I would face the wall and roll a tennis ball in each hand up and down the wall. (That first month, my range was just a few inches.)

That first week home was a bit blurry. I was certainly in a Percocet fog, but that helped me from being under a cloud of pain. I took all of my antibiotics but I really should have done without the prescribed Valium I was given. My plastic surgeon had me on Valium to help relax the chest and back muscles against the tissue expanders. Two weeks later I would learn just how much I dislike Valium.

Overall, I was feeling pretty great. I would attempt to get out somewhere once each day near the end of that first week. I even went to the Christmas party for my son's kindergarten class that Friday. I would tire out very easily and I was always happy to get back to my pillows in the afternoons.

I was anxiously awaiting my one-week follow up with my breast surgeon. Considering my mom's surprise, I really wanted to know I had the 'all clear' from my pathology report. Dr. Lawson gave it to me one week after surgery. We went in and she told me all looked great and that I had certainly saved my life by having the surgery. My breast tissue was very very dense and it would have been extremely hard to find cancer in the early stages. This visit was a milestone for me. I never doubted that I was doing the right thing, not once. Having the 'all clear' really instilled a sense of gratefulness in me that I hope to never lose.

Next stop was my follow up with the plastic surgeon. I wanted those drains out big time, but it just wasn't meant to be. My chest was bruised so badly and certainly would require the drains to stay. In fact, my chest looked worse this week than it did those first days following surgery. I was actually getting concerned that I was going require another surgery to remove skin that couldn't survive. Some patients experience low blood flow to certain areas, resulting in complete skin removal. If I could avoid that, I was willing to wear the drains as long as necessary. I was experiencing pain and pulling from the drains, and extreme discomfort around my chest, but it wasn't anything I couldn't handle. I left his office that day with more pain meds and the hope that maybe next week he would pull the drains.

We had a quiet Christmas and New Years. I would attempt my one outing and then I'd relax for most of the day. Driving was completely out of the question, so I had my family chauffeur me around. Once or twice my outing was to get my hair washed and styled. I even went shopping one day. My husband took me to the mall to find a top that would accommodate the drains for our anniversary dinner. (We wanted to get out of the apartment and I wanted to wear something other than a hoodie.) I assured him I would be fine, then I proceeded to get myself stuck inside of a blouse while I was alone in a dressing room. I couldn't lift my arms but for some reason I had to try on this top. Looking back, I almost wish there was a camera to capture the absurdity that I had turned myself into. All I could do was sit on the chair in the dressing room and alternate between laughter and crying. Nobody ever came to check on me and I had left my phone with Jamie. At least 20 minutes went by before I was able to find the perfect amount of yoga, finesse and frustration to free myself from the shirt. I zipped myself and my drains back into my hoodie and went home to my pillows.

My Dad and Nina stayed until the first part of January. My mom was still recovering from her surgery and she wasn't yet cleared to travel. Even though she couldn't travel, she was back to work within three weeks. Most people didn't even know she had the surgery. She had a minor complication, required another small surgery, and resumed her normal life.

I was having a minor setback of my own. My plastic surgeon finally removed my drains 3 weeks after surgery. My bruising was going down and all was looking good. I had taken my last pain pill a week before and was trying to navigate the feeling of my new normal. Without the pain meds, the expanders made me feel like cinder blocks were on my chest. It was extremely uncomfortable and it took a lot of getting used to. I'm not sure if removing the drains was traumatic for my body or if I developed the flu, but I was knocked down for another three weeks. I had a low-grade fever on and off and chills that wouldn't stop.

About that time, the hormonal aspect of the surgery kicked in and I entered a mini-depression. I had been warned that having a double mastectomy triggers a major hormonal imbalance. I was somewhat prepared for it, but I quickly became miserable. I was so uncomfortable and I was so depressed. These feelings were so unlike me..I'm an optimist, but my glass was certainly half-empty then. After a week of nonstop tears, I had a little talk with my doctor. Turns out Valium can be a depressant for many people. He quickly switched me to a different muscle relaxer, Robaxin, and I was feeling back to myself within a week.

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Sunday, August 2, 2015

Post-Op

My first memory post-surgery was being wheeled down the hallway while in the hospital bed. I was in extreme pain and they were taking me to my room. From what I was told, this was sometime after lunch. I remember seeing my sister, my aunt and my husband in the hallway, all staring at me with wide eyes. My sister said I was crying from pain, and that they remained in the hall until I was settled in my room.

I must have fallen back asleep, thanks to the morphine pump. I remember right when they wheeled me into my room, the nurses made me do things that I thought were ridiculous for someone in my condition..sit up, move from the stretcher to this bed, stop screaming, push yourself up, rate your pain, etc..It was chaos, but I was just so relieved to be on the other side of surgery. I knew I had a long road of recovery ahead of me, but the anxiety of the surgery itself was over. I was in and out of sleep and vomiting regularly for the first 24-48 hours, but the hard part was behind me. 

The first time I glanced at my chest I was horrified. Mostly because of the drains. The whole concept of them coming out of my body just repulsed me. They weren't painful then though, just creepy. They were full of blood and the nurses were in to empty them often. I also remember being surprised at the lack of bandaging. There wasn't any. Just drains and me. (To my friends, M and L, I am SO sorry for flashing you and making you look during your visit...this modest girl blames the drugs.) My chest itself looked like it had taken the wrong end of a baseball bat, many times. My entire chest was horribly bruised. It was a mess of black, blue and red, and my right side was much worse than the left. The incisions were horizontal, and ran from the first third of my chest towards the middle of my armpit. One on each side. (My doctor believed having incisions there allowed for a more thorough and clean removal of breast tissue.) My drains were placed a few inches under each incision. There was a clear tube approximately 24 inches long, with a clear, squishy bulb at the end.

My chest looked completely lopsided, thanks to the tissue expanders. I'm sure my doctor attempted to make them appear symmetrical, but they settled into a uneven mess. One side was very high, and the other felt like it was in my armpit. I was somewhat surprised by them not being flat. For some reason I was under the impression we would be starting with a flat chest, but instead there was approximately 100-200 cc's of saline in each side. They felt like cement bricks and they looked even worse than that.

I had pretty bad nausea, but other than that I was doing just fine. I was sitting up in bed watching tv, reading, visiting, emailing and enjoying my clear liquid diet. I had packed fluffy socks, comfy pajama pants and a cozy robe (thank you, Annie C!), which the nurses helped me change into. I know getting out of the hospital gown truly gave me an added boost of recovery..

My sister stayed with me that first night. We made a little slumber party out of it. I was up and walking around by the evening, but I was moving at a snail's pace. I was scheduled to only stay two nights, but my doctor thought I should stay one more night to manage the pain. I wish I could have taken that IV home with me. Those pain meds were fabulous, but on December 16, 2012, I finally left the hospital. I was leaving my breast tissue behind, but I was armed with Percocet, my temporary cement chest and enough antibiotics for a small army.
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Pre-op

My father and my step-mother, Nina, came into town a few days before my surgery. We wanted to get them into the swing of the kiddos' schedules before just blasting them into our chaotic life. Since we were in an apartment, they stayed at a nearby hotel for three weeks. (One of the many things I will forever be grateful and indebted to them for).

I had a pre-op appointment at the hospital a few days prior to surgery. I went to this one alone because I really wanted to get my wits about me, I wanted to take stock of my emotions and get an accurate read of what I was feeling. While I was in the pre-op waiting area, a woman about my age was sitting with her mother. It was obvious that her mom was battling cancer. She had her bald head covered with a pink scarf and had a few cancer awareness pins on her shirt. Again, my thoughts immediately went to a place of thankfulness. I was so grateful to be able to do this without a cancer diagnosis. I could get through this without the fear of chemo, radiation, extreme sickness and struggle. I was in a good place, and I knew I needed to be doing this.

I was still sitting next to the two ladies when an older hospital worker walked by. This gentleman was wearing scrubs, sneakers, and a lanyard and matching scrub hat with Florida State Seminoles all over them. He was also wearing the most genuine smile one can have. I'm a Florida Gator, but seeing the familiar FSU rival at that moment was just another reminder that life was so precious. There are so many things, big and small, that make life worth fighting for. I was going to do my part to give myself the best odds to be around for my family. (And for sure I was going to have this all behind me before the Gators kicked off college football season in the Fall.)

The mother sitting next to me saw the gentleman and immediately called him by name and burst into tears. He had the same reaction to her. They had the most beautiful conversation and I was so happy to have witnessed it. He just hugged her, cried and said, "you were in such bad shape the last time I saw you. When we wheeled you back, I left you and then I just prayed and prayed for you. I really didn't know..Look at you now!" She went on to tell him that she was so scared sitting there and had been praying to see him. She was convinced that he was her good luck charm. She was on the road to recovery and now she knew she was going to be ok. She said every time she had been in for surgery, he had taken her back. Here he was again. I said a little prayer right there. I wanted this mother and daughter to be healed from the pain of cancer, and I certainly wanted this beautiful soul to be the one to take me back when it was my turn for surgery.

My pre-op appointment consisted of bloodwork, massive paperwork and lots of instructions. The nurse gave me a special cleansing soap I was to use the morning of surgery, along with a very sweet, reassuring compliment. It really touched me how many people at the hospital came over to tell me how brave they thought I was. I was honestly just thankful that I was able to do this. To me, the bravery was found in the mother and in every other person fighting, every day, to beat their illness.

The morning of surgery, my Dad and Nina came before the sun was even up. We had to be at the hospital by 6am. I kissed my kiddos and parents goodbye and off we went.

My husband, Jamie, and I were sitting in the same seats I was in when I witnessed the mother and daughter. We didn't say much. Partly because Jamie isn't a big talker, but mostly because I was praying and praying for that sweet precious man to be the one to walk me back. He was. I had told Jamie about him and I'm sure he realized who he was when I jumped up and gave that man a big giant hug when he walked through the doors to get me. Then I noticed he was wearing a matching scrub hat and lanyard for a different football team. I don't remember what team he was wearing that day but I do remember our conversation. I asked him about it and I told him about seeing him the last time I was there. He stopped what he was doing and told me how yes, he is a huge fan of college football but he doesn't have a team. He was on God's team. He just loves the sport. Every day he wears a different team because it makes somebody else's day. It brings a smile to someone who is usually at the hospital desperate for one. Anything he could do to bring a genuine smile and make a heartfelt connection with someone, he wanted to do it.

That sweet man certainly made my morning an experience I was grateful for. I was so thankful to have met him and to have spoken with him. He was doing his part to make the world a special place. He eased my nerves and he probably did the same for Jamie. He settled us into the waiting area, then he went on to work more magic.

I was called back, and then things began moving much too quickly for me to feel anxious. Jamie had to remain in the waiting room but I was assured that he would be back before I went into the operating room. I was given the standard hospital gown and my first of many anti-anxiety meds. Think what you will about anti-anxiety medication, but they were so helpful that day to me. I wasn't even all that embarrassed about being in my glasses in front of my adorable plastic surgeon, and I. Never. Wear. My. Glasses...Ever. I did have a serious heart to heart with my nurse about the glasses though. I begged her to make sure they were in place, on my face, before I even woke from surgery. I have horrible vision. The thought of coming to after surgery and not being able to see or reach for the glasses was very frightening to me. She assured me that it wouldn't be a problem.

I don't remember my breast surgeon coming in but I do remember chatting with my plastic surgeon, Dr. Robbins. He was in after a steady stream of nurses and the anesthesiologist. He did a quick debrief with Jamie about things and that truly is the last thing I remember.


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Leading up to surgery...

I was aimlessly walking around the mall looking for my 'post-op' mini-wardrobe while dealing with the fact that both of my parents had now had cancer. (My father had beaten prostate cancer a couple years prior to this.) I certainly wasn't dramatizing the fact...my mom was lucky. In fact, my father was lucky too. He never had to do chemo, but he did have a somewhat long road of radiation. Both of my parents were now survivors. We knew plenty of people who didn't get that privilege and others who had one heck of a fight to earn the status. I beg of you readers to please know that never once, never did my mom or myself think "why me." In fact, I'll pat my dad on the back here also and confidently say that I know he never thought that either. The three of us just aren't wired that way. We are fighters, sometimes silent, but always doing what we can to get what we want.

Forgive me, back to walking through the mall aimlessly...I was definitely a little shell shocked that both parents had officially been diagnosed with cancer. That's just scary. Period. I must have looked a little lost because before I knew it, a friend was standing right in front of me. She was waving at me and I never even saw her. She was literally right in front of me calling my name before I snapped into focus. I apologized then explained why I wasn't all there. I have no doubt that the good Lord made our paths cross that day. Turns out, she also had the BRCA gene, had undergonea double mastectomy and a complete hysterectomy. I had no idea! (Her story isn't mine to share, so I won't elaborate, but I will say that I am forever indebted to her and grateful for her help, advice, care packages, meals and her strong shoulder of support.)

I left the mall armed with my new wardrobe and the confidence that I would be through this in no time. T-minus two and a half weeks.

Let me bring you up to speed on my pre-op journey. When my OBGYN called to tell me I was BRCA positive, she referred me to a wonderful breast surgeon and also a plastic surgeon. I was still waiting for my daughter to finish dance class, and I had already scheduled my appointment with the breast surgeon. Turned out the plastic surgeon my OBGYN recommended didn't take my insurance. I called the breast surgeon back, asked for the name of two other plastic surgeons, then quickly made an appointment with the first one. I was in the breast surgeon's office by the end of the week.

I liked Dr. Lawson immediately. She was extremely calming, very knowledgable, reassuring and completely confident that I could get my surgery scheduled before the end of the year. She was one who quickly said something to the effect of, "if you were my daughter, we would schedule this surgery yesterday." Dr. Lawson agreed with my feelings of the sooner the better, and even made the comment that she was so happy to meet a patient that she didn't have to convince to have the surgery. So many of her patients in my situation had decided to wait out a year or two and 'see how it goes.' Many of them didn't make it two years before they were given a breast cancer diagnosis.

Since my mind was already made up, Dr. Lawson ordered the mammogram and the MRI. Her office began working to find a surgery date that would work for both her and the plastic surgeon (assuming I liked him.) I asked for her to please put me in contact with any former patients who went through the same procress. I was really wanting someone to spell it out for me. Tell me every little thing to expect. Surgery was completely foreign to me. I think I was mostly terrified of what it was going to feel like waking up from surgery. Would the pain be excruciating before I could call a nurse in for pain medication? Could they do something so I could skip that part altogether? Could pain meds be given before I even woke up? Oh my gosh, the questions I had...I had so many and she answered them all. Then she calmly said to relax, it will all be fine. So I did.

I met my plastic surgeon, Dr. Robbins, shortly after that. I liked him right away and decided to do whatever he suggested. I begged him to do the FULL reconstruction at the same time as the mastectomy. Please, I begged, spare me the long and painful process of having tissue expanders. Just put implants right in there, make it look good and call it a day. Easy! Infact, I was even planning on having the full hysterectomy that same day as well. My OBGYN said that would be fine but Dr. Robbins and Dr. Lawson quickly vetoed that. They were both insistent that the hysterectomy be done at a later date. Just too much shock for the system for one day. Dr. Robbins was also adamant that I go the route of tissue expanders. He explained that he would need to create a pocket for the implant (since I didn't have implants at the time), but had I already had implants he could put some right back in and skip the tissue expanders. He was certain that I would be much happier with the outcome if I did that. He could take his time, and guarantee that everything would look great, if not better than my current appearance. He was certain that if we put implants right in I wouldn't be as happy with the outcome and would require another nip, tuck or two. I reluctantly agreed to have the expanders. I left his office that day feeling a little down, but I was confident that he knew what he was doing.

Next stop was my MRI. My MRI was completely humiliating because I'm very claustrophobic and my cat-like reflexes kept preventing me from allowing the bed to roll into the tunnel with me on it.  One very strong Xanax, lots of tears, and a super sweet nurse who popped in some earplugs and sat next to me to hold my hand (for 31 minutes)...and I did it. I'm not sure I would have been able to complete it otherwise. I wasn't prepared for the complete and utter racket that is an MRI. I was in a metal tunnel on my stomach for nearly 30 minutes. Every few minutes or so a series of loud banging would start and continue for about five minutes. That was a miserable experience for me, but thankfully it was over. I know open MRI machines do exist, but I wasn't given that option and time was of the essence to me.

Having never had a breast MRI before, I was certainly uneasy about what might show up. Luckily things looked fine and I was cleared for surgery. I met with both my breast surgeon and my plastic surgeon once more for quick pre-op appointments, then it was go time.

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My Mom's Story

Let me share my mom's story with you.

My mom briefly toyed with the idea of not having the surgery. Heavy monitoring by doctors and possibly taking preventative medications were mentioned. She quickly felt confident that surgery was the right choice for her.

Once surgery is scheduled, the breast surgeon orders a mammogram and a very in-depth MRI.  These help the doctors know what they are dealing with.  My Mom's MRI had a very suspicious spot turn up on her right side, which needed a biopsy.  It was a huge scare. We truly had a phone conversation where we both said, "this is it." This is the breast cancer we have always known she would get. For whatever reason, we just knew she had it. My late stepfather even appeared in one of my sister's dreams. My sister came over to my house, I mean apartment (remember, building a house) in tears. She said, "I had a dream about Bill last night. I was so startled to see him that I was just crying in my dream. I was so happy to see him. He was just sitting there smoking a cigarette when he calmly looked me right in the eyes and said, "I'm here for your mom, Geri. Your mom is going to need my help, so I'm just here to make sure she is ok." If you know us, dreams are something we rarely take lightly. We knew my mom had breast cancer, we were just praying that it hadn't spread.

You can imagine how surprised we were when her doctor called with the news that she was fine. Well that was all the confirmation that any of us needed. We would do anything in our power to make sure we were able to prevent that kind of scare again. Double, preventative mastectomies for us! Yes please! We could only be so grateful that we didn't have to schedule around chemo or radiation. Who cares if we might be a little loopy from pain medication throughout the holidays? At least we didn't have breast cancer! For us, we were doing the right thing.

While we were so relieved that she didn't have cancer, we were both very anxious for our upcoming surgeries. We had no idea what to expect. I was busy reading everything I could find while my mom just continued on with her day to day life. Her breast surgeon referred her to a plastic surgeon, who concluded that tissue expanders followed by implants would be her best bet. My mom was in her late 50's at the time and wasn't too concerned with the vanity side of things. She wanted to look good when this was all over, don't get me wrong, however her main concern was eliminating her breast cancer risk. She felt comfortable with her doctors and was on board with whatever they suggested. Her propolactic (preventative) double nipple-sparing (skin saving) mastectomy was scheduled for the Tuesday before Thanksgiving. She had a full hysterectomy years prior, so that element of her equation had already been removed.

While my mom's surgery was completely covered by her insurance, she was notified that this would be an outpatient procedure. This horrified me, but my mom wasn't worried. My aunt is a nurse and she would be by her side, along with my uncle, my mom's boyfriend and her close friends. Due to my husband's work schedule, I was unable to get there until the next day. My mom was really adamant about her siblings not missing Thanksgiving with their respective families. I was going to be there to take care of her for two days, my aunt would go home to Nashville, then my aunt and I would once again switch places. I would return to Nashville while she would return to my mom's bedside. We were all set and more than ready to have this behind us all.

Fast forward a month to her surgery. I was on pins and needles waiting for my aunt to call letting me know that my mom had made it through surgery. Everything went great. Doctors made the comment that she had "very dense breasts" but everything went well. Her expanders were in place, along with drains, and she was in recovery. She experienced some major nausea and vomiting in the hours following, but was released to go home that evening. My aunt took her home, took care of her, and made her comfortable.

My mom was in and out the sleep the day of surgery. She barely remembers it. I spoke with her and knew she was going to be just fine. The next morning I flew down to Orlando to take care of my mom and celebrate Thanksgiving with her. (My wonderful hubby took our four kiddos to my aunt's.) My aunt and I had a hug and a debrief in the airport, then we went our separate ways. My dad picked me up at the airport and took me over to my mom's. (My parents divorced when I was three but maintained a wonderful relationship, which I will forever be grateful for. )

When I arrived at my mom's she was in great spirits and didn't appear to be in too much pain. She couldn't use her arms at all for anything more than brushing her teeth and pushing buttons on the tv remote. She was really sore but was able to get up and walk around. There was a drain on each side and she seemed to be dealing with them just fine. I, however, was absolutely appalled by the drains. To this day we laugh about it. I'm not sure what I was thinking, but I was completely unable to help her care for them. My reaction to them is one that I'm not proud of.

The drains needed to be emptied and cleaned at least twice a day. I was prepared to man up and do the job. I didn't even make it to seeing her incisions before my world started swaying, I heard that dreaded freight train and I started to see black. I ran for the couch and apologized profusely. No way could I do that without passing out. I didn't even want to see her chest. I was feeling so badly and couldn't stop apologizing, my mom couldn't stop laughing at me. Who were we kidding? I am probably the last person that could help her with them. Fortunately, my mom is as tough as they come. I helped her up, I left the room and she took care of her drains herself. I attempted to do it two more times and each time I ended up in the same position on the couch, fighting off a fainting spell. Luckily, insurance provided a nurse to visit her at home daily, redress her incisions, clean her drains and evaluate the situation. The nurse came by later, did her thing and we called it a day. I was so impressed by how easy this seemed. I woke my mom up every four hours, gave her antibiotics, pain medication and food. She was doing great and it was me who insisted she take it easy and relax. She wanted to be up and moving around.

The only thing she ever complained about was not being able to get comfortable, and the pulling from the drains. She couldn't use her arms to adjust her pillows, her clothes, her hair, etc. Imagine being on your back in bed then deciding you wanted to sit up, turn over or get out of bed. Now try doing any of that without moving your arms...

Her incisions were vertical and didn't seem to be bothering her at all. Truly the main concerns were making sure she didn't develop an infection, and keeping her fed so she didn't get nauseous from the pain medication. She was doing great, sleeping well and feeling grateful the hard part was behind her. We celebrated Thanksgiving, and I had to head home a day or two later.

Once I arrived and settled back home in Nashville, it was go-time to prepare myself for my upcoming surgery. I had just under three weeks to get ready and to WAIT. I knew I would be living in button-down pajamas and shirts for awhile, so I decided to hit the mall and pick up a new mini-wardrobe for post surgery. I had just pulled into my parking spot when my mom called. She and my aunt were leaving her doctor's office after having been called in for a meeting. The pathology report came back and revealed a surprise. My mom had breast cancer. It was in her left breast, and was in a very early stage. Yep, her left side,the one that looked perfectly fine in the mammogram and MRI. We were shocked, freaked out and grateful, all at the same time. Our worst fears had come true. Luckily though, her doctor said the surgery had saved her life. Clearly it never would have been detected early. It WAS early and no sign of it popped up on either scan. It had not spread, and all of the surrounding tissue was removed during the surgery. She was to now be considered a 'survivor' and wouldn't need to undergo any sort of treatment. Maybe my step-father and my mom's guardian angels did work a little magic from above. Who knows, but we were 350% sure that we both needed to have these surgeries.

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BRCA 1

I remember watching Oprah many many years ago about a mother and her grown daughter who both opted to have preventative "skin saving double mastectomies".  Something told me to file this away for later because I would probably need to remember this information.  I was right.

Fast forward to October, 2012.  I was 34, my husband and I were temporarily living in an apartment in Franklin, TN (our house sold and we were in the process of building our dream home), and we had four young children (ages 5, 4, 3 and 6 months).  I was just your average stay-at-home mom, trying to stay sane in the insanity that was my life.

I grew up in Florida and my Mom was still living and working in my hometown. My husband and I were constantly begging her to retire and move up to TN and live with us. She ha finally agreed to do it and live with us once our house was complete. I'm sure we were chatting about that on one of our many daily phone calls when she told me that she went ahead and had herself tested for the BRCA genes.

As far back as I can remember, my Mom feared getting diagnosed with breast cancer.  Her Mom and all of her Mom's sisters passed away from some form of breast or ovarian cancer.  That strong family history of cancer, along with our Ashkenazi Jewish genetics, puts us on the scary side of the statistics.  After my Mom had a questionable mammogram, and with a borderline neurotic daughter (me) hounding her, my Mom decided to get tested for the dreaded BRCA 1 and 2 genes.  She was positive for BRCA 1.

I called my OBGYN the day we received my mom's results to schedule my own test. Then I began my research. I knew what I would do should I test positive. There was not a single doubt in my mind. Part of me even thought testing positive could be a blessing for someone as worrisome as me. I know how badly that sounds but here is my thought process: should my results come back positive, my insurance would completely cover a preventative bilateral (double) mastectomy, reconstruction and a hysterectomy. I could reduce my risk to less than 10%. If I tested negative I could continue to worry and worry about someday, maybe getting breast cancer. And trust m worried. See, I'm that person who hears symptoms of an illness and immediately I run to my computer to self diagnose. I had already had a mammogram and it was such a stressful experience for me. Not the mammogram itself, but the waiting for a call with good or bad results. At least if I tested positive I could take a major step to reduce my anxiety.

The test my mom had consisted of a blood draw. Mine was as simple as swishing mouthwash and spitting it into a test tube three times. That's it. I completed minimal paperwork for it, and the rest was up to my doctor's office. It took around three weeks for my doctor to call with the results.

Here is my first bit of advice. Make sure your doctor is one who will call you. Make sure he or she will sit with you in person or on the phone, and answer each and every question of yours that comes to mind. I remember the exact moment that mine called. I was in the waiting area of my daughter's dance studio chatting with the other mothers while our girls were in class. My doctor said, "Kari, your results came back and you are a carrier of the BRCA 1 gene. Here's what that means......"

My doctor and I had already spoken at length regarding what I would do should results come back positive. She knew I would elect to have both the bilateral mastectomy and a full hysterectomy.  I scheduled a sit down with her to discuss the hysterectomy and she referred me to a breast surgeon and plastic surgeon. I hung up and started my journey.

I took my BRCA test sometime in late September. I received my results in mid-October. My first surgery, the double mastectomy, was December 13. I realize this timeline seems crazy, but for me it was ideal. Once the results came in I could not wait to have everything behind me and just continue life as the new me. For me, anxiety always begins when I'm anticipating the unknown. Until this point, my only experience as a patient inside of a hospital was when each of my children were born. Even then, for such routine medical events, I have NO doubt that the nurses involved shake their heads and laugh at the ridiculousness that was me.

I am a complete wimp. I'm overly modest and somewhat immature. There is a long list of words that you will never hear me say. I can't even hear them without blushing. I get lightheaded every time I have a blood draw. Numerous times I've even passed out after one. I am a natural redhead and I prove the anesthesia requirements for us Gingers to be accurate. We require approximately 20% more anesthesia than the average person. I tell you all of this so you can see I would never just jump onto an operating table at the suggestion of one doctor. I would, however, after learning all about what being BRCA positive means.

When you discover that you're a carrier of the BRCA gene, it slaps you with the reality that a breast cancer and/or ovarian cancer diagnosis is a very real possibility in your future.  While not all breast cancer patients have this faulty gene, nearly 87% of us with BRCA 1 and/or 2 WILL at some point be diagnosed with breast cancer.  I once heard that only 5% of diagnosed breast cancers are BRCA positive women, yet nearly 88% of BRCA carriers develop breast cancer. Our ovarian cancer odds are slightly better, somewhere near 50%.  While these statistics aren't a guarantee that you will develop cancer, my mom and I simply weren't willing to risk it. We both could have chosen to do nothing and have our doctors closely monitor us every six months. If you know us, it was no surprise that we both opted for and scheduled our surgeries for as soon as humanly possible.

My Mom's double mastectomy was on the Tuesday before Thanksgiving 2012 in Orlando, and mine was December 13, 2012 in Nashville.  I can't even count the number of people who considered this timing to be "insane" or "ridiculous".  I heard from so many, "Why don't you just wait until you get moved into your new house, then deal with it?"  "Your kids are so little! Why now?" "You and your mom should just wait until after the holidays, stagger your surgeries more so then you can help each other out."

Why now?  Here's why:
- If I'm given the chance to do anything, and I mean anything, to prolong my time here on Earth with my loved ones, sign me up.
-Is there EVER a convenient time to do something like this?  As far as I was concerned, get any cell out of my body that could turn into cancer at any given second.  I felt like a ticking time bomb, and I wasn't going to wait around.  Once those cells turn into cancer, it would be a whole new ball game.
- My mind was already made up but when two of my doctors said "if you were my daughter, I would ask that you choose to do this ASAP." I did.

I fully understand how deciding to do this could be a struggle. Many people would rather just take their chances and let whatever will be, be. I also hear the concerns of those who feel they might mourn the loss of parts of their female anatomy. This is certainly not a decision one can make lightly. I get that, trust me, I do. I am in no way trying to persuade anyone to make a decision one way or the other. I just want to tell the story about a mother and her grown daughter who made the same decision, saving both of our lives in the process.

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Friday, July 31, 2015

Welcome..

This blog began as a book. Upon completion, I felt publishing this as a book was the wrong way to go. I wanted something more for readers. A book just seemed too 'static.' The medical world is always changing, information is always changing, and people simply want a community. Putting what I had written into this blog was the perfect solution. If BRCA has become part of your vocabulary for whatever reason, I hope you or someone you love finds some answers and maybe even some comfort from my story.

Up until this experience, I never dreamt of writing a book. I'm a voracious reader and I tend to turn to books to find answers to all of life's questions and problems. Don't get me wrong, I talk things out with my closest circle, but I find my own conclusions reflecting on both the words I've read and those I've heard. That being said, when faced with the BRCA situation, I found only two books to rely on.

The goal here is not for me to bore you with my "story." I'm not big on talking about myself. I just wanted to put my story out there to help someone else. If one person makes a judgement call like I was faced with that could save her life, I'm happy. If this helps one scared soul prepare for surgery, calm her nerves and feel confident that she will come out of this ok, I'm happy.

Prior to surgery, I just wanted to know what to expect. I wanted to prepare for every situation. Hope for the best, prepare for the worst. I really really wanted to know EVERYTHING. My hope is that readers will fully understand what to expect, how to prepare and that they are not alone. I asked my doctors for references to patients who went through my same struggle. I spoke to anyone and everyone that I could. There really weren't that many. Three. That was all I could find. Friends, here is my personal contact information, Brcactivist@gmail.com. You will reach me. Please reach out and let's conquer this beast together.

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