Approved and Scheduled!

Well, we found out our insurance has approved my surgery and will cover 100% after we meet our deducible. Woohoo!! We were a little nervous that we might have to pay 20%--which adds up FAST!! Then, a couple of days later I was called with a surgery date at North Memorial. I was immediately nervous. That is not were we talked about having it and yikes, it was now becoming so real. The lady on the phone wasn't thrilled, but agreed to talk with the surgeon and plastic surgeon again and find a date for Fairview Hospital. So, now it is set: February 10 at Fairview. Unfortunately, we will be spending our anniversary either in the hospital (only if things don't go well) or recovering at home. Sorry, babe!! I know this isn't what he imagined happening on our special day!

People ask how I feel about it now. Well, the bottom line is: I'm a little scared now that I have a date. It is a little more permanent and real. I know I want to do it, but the thought of surgery and recovery is a little nerve racking--especially with 2 young boys running around. I know this is a good decision for me and my family, but there is a small sacrifice. I know I will be happy when it is done and I will have a peace about it all.

Two Years

The day after Thanksgiving marks the 2nd anniversary of my mom's death. And let me tell you, each year, I relive the horrible week we weren't really prepared for. It all starts on Halloween when I remember how my mom was heading to Israel and how she had a hard time breathing on the plane. My dad told me and I felt so sad for her. She always wanted to go to Israel and she was on her way, but not with 100% lung capacity.......... and with a group of strangers. It was a little risky health-wise, but she was determined. She struggled through the trip, but she made it!

When she returned, it wasn't long. She was scheduled for a surgery to help reduce the amount of fluid going into her lungs and I didn't think much of it. I remember getting the call that things didn't go well and how my dad actually thought she was going to die during the surgery (which they didn't even do). Life was never that same after that. A surgery turned into hours and days at the hospital watching our mom stop eating and eventually doing a lot of sleeping (which we later found out was a coma). We all took turns staying, and when I couldn't stay, my sister and I texted updates about our mom all night. It was so surreal and we felt so helpless.

When our mom was awake, we all tried to stay so positive. We'd excuse ourselves and cry in the hall. I remember one day when I arrived I was told in the hall that she had a huge tumor and they couldn't do anything about it. It was pretty much the worst thing to hear. I walked into the room, sat on the bed with my mom and cried while I hugged her. I told her I was sorry I was crying and she said, "I know, this is tough stuff." I wish I could write that after that point I asked her important questions, soaked up her wisdom or even listened to her talk about her life, but things went fast, it was busy with visitors and I just didn't think she was going to die (denial maybe).

When she was awake, she didn't really talk much or would try to fall back to sleep. I do have a memory of all of us trying to get her to eat. My dad went out and bought her a blizzard. She wasn't even close to interested in it and if you knew my mom, you know that wasn't normal. We all have an amazing sweet tooth. She gave us a look and I knew she wasn't going to eat anymore. This was one of the many signs that her body was done fighting. It was hard to see and it only got worse.

It is amazing how much I miss my mom (and especially this week) and all the memories I have of her last weeks alive. I wish I could call her up or go and cuddle with her on the green couch. Today I heard a song from her funeral and I cried in the kitchen. Yesterday, I heard another song that just reminded me of her and I cried as I was driving with my kids. I try to talk about my mom with the boys, but they don't really remember her. This is the hardest thing for me. I wanted my kids to know my mom and have fun memories with her. But I will continue to talk about her, show pictures of her and sing some of her favorite songs with my kids. They might not know her the way I wanted, but they will at least know a part of her.

It feels good to write about this......and I'm sure there will be more this week.

The Waiting Game

Well, we met with the plastic surgeon about two weeks ago and things are on there way. After our initial introduction, he told me to put on the gown and he'd be back. Well, he forgot to mention that he'd be brining in his assistant to take pictures of my chest.....and my face so she "could recognize me by my face and not just my chest". Ha! Like my chest would leave that kind of impression on someone. : ) It was kind of strange, as I stepped into an adjoining room set up for pictures and disrobed in front of a stranger and my husband in the next room watching. Just a little weird. I wish I would have known about the pictures. I would have had perfect posture to make sure no one saw the lines from my stomach folds. Oh, the things you think about.

After a long and thorough conversation about the operations, options and details, we were on our way. I liked him. We made him laugh which is a good sign. He told me this was a smart move and again, I felt encouraged by my decision. I do have a lot of decisions to make- do I keep my nipples (another interesting conversation), do I do a one-step or multiple surgeries, etc. At this point, I want someone to tell me what to do (because they know best) and I will do it.

I have decided to stay in MN for the surgery. I threw around the idea of traveling to NY to have it done in one-step at the same place my cousin had it done, but I think I need to be home. I want to be surrounded by family and friends and I don't think I could be away from my boys for that long. In fact, I have a feeling this surgery will bring a lot of feelings out and I just might need the support of family and friends.

Now we wait. The plastic surgeon sent a letter to our insurance company and now we wait to see if they will approve it. If they do, we will schedule the surgery for their earliest appointment available, which is in February now. I want to get in as soon as possible so we only have to pay our deductible once for all of the surgeries. This whole process/surgeries could take up to a year.....I hope not though. And now we wait and see.

Why are you doing this surgery?

I love this question and I hate it. I get this question quite a bit when I tell people what I'm about to do. What's great about it is that I have to rethink why I truly am doing this surgery and communicate it to someone who doesn't know my family history, the hundreds of dollars or more (more like a thousand) I spend on preventative testing a year and the statistics and encouragement I get to do the surgery from my doctors. The bummer thing about this question is you can immediately tell who thinks this is a drastic decision and maybe unnecessary. They give you a quick "wow" and an "I'm so sorry" look and don't give you much eye contact. It is very interesting. It sure helps you to be confident in the decision you've made and how you communicate it to others.

I have to admit, there are days when I struggle with how I could be one of the 40% who doesn't get breast cancer or how I should trust God. And then there are days when the slightest pain makes me think that I have cancer. It sure hasn't been fun. So, I can have a surgery that reduces my chances to almost nothing or live in fear thinking about WHEN I will have cancer. It sure isn't a fun place to be in and I'm ready to take the next step to give me peace of mind.

Next step: I continue to research the One Step surgery (It has been nice because I have a cousin who has already done this surgery and is full of helpful information) and I will meet with a plastic surgeon next week. Time to write down questions, get answers, make a decision on which surgery and then set a date.

First Step

We visited with the Breast Surgeon this week. It all seems so surreal, but part of the process. She talked through my family history, gave me an exam and explained the process. It all seems so matter of fact. Luckily, I really like her. She was personable, nice and explained things in great detail. I actually felt like I was doing the right thing. And let me tell you, that is a big deal for me.

My mom was a very natural person. She didn't want to do treatment for her cancer and I think she would have flipped if she knew I had taken the BRCA test and started to explore this option~ prophylactic mastectomy with reconstruction. So no matter what I am doing, there is a small voice that I attribute to my mom~ "why are you doing this? You don't even know if you'd get cancer. This is so extreme." It is a constant struggle between how I grew up and what I know now...and my family. Some days it sucks and others it challenges me. I love my mom dearly, but I know I have her stubborn-ness. Which can be good and bad.

My next step is to meet with a plastic surgeon. I can't believe I'm meeting with a plastic surgeon and I'm not thrilled. You would think I would be picking a huge breast size and start to enjoy this new ride, but I'm a little nervous. My surgeon told me the whole process could take up to 8 months. Wow, with two small kids, this is a BIG undertaking. She said I would stay in the hospital for 2 days and not be able to exercise or lift heavy things for about 4 weeks. For those who know me, that's a long time not to workout. I'm kind of obsessed with working out and doing push-ups (I have bad arms and I've worked hard to get them under control). It really might push me over the edge. This is how sick I am......I've been trying to think of the things I could do that wouldn't hurt my arms, chest, etc. I know this is all worth it, but still hard to wrap my mind around.

I do have a peace about doing the surgery. Although it scares me, I know what I am doing will help me in the long run. According to my doctors, it isn't a matter of IF I get cancer, but WHEN. With my family history and that I am BRCA2 positive, my chances are high. They say I have a 40-80% chance of getting breast cancer and with this surgery, I can make it 1-2%. And all I can think about is: I WANT TO KNOW MY GRANDKIDS!!! I still cry thinking about how my kids will never know their grandma. They will never know how fun, sweet, and strong she was. They will never know that she loved crafts, garage sales, angels and laughing. That she liked to sing Christian songs, could let you know what she was thinking without saying a word, and liked to hide chocolate around the house (I could always find it). I want to be around. I want to be healthy. I want to do what I can to survive.

I have a long road ahead of me. I have a lot to think about. Until my meeting with the plastic surgeon, I will think of questions, pray and get ready for anything.

The Adventure Begins

In November, 2008, I found out I was BRCA-2 positive. A month later, my mom died from breast cancer. It was a tough month and I was about to see that my life would never be the same with this new found knowledge.

My sister and I both were tested around the same time, but thank goodness, I was the only one that had it. My cousins were both tested too and only one tested positive for the gene. So far we were right with the statistics. Their mother (my mom's sister) also died from breast cancer.

Many decisions were to be made, and in the midst of grieving the loss of my mother. I remember going to the doctor and talking about the statistics for me to get breast cancer and hearing about all the screening I was to do. I teared up just thinking about how this disease MIGHT effect my life.

Exams. mammograms, breast MRIs, pelvic ultrasounds- my head was spinning as I realized how this new knowledge was about to change my life forever. I remember my first breast MRI. I was waiting at the hospital alone, not sure what this was going to be like. It was an eye-opening experience. After signing that I could die from the procedure (only a 5% chance), I walked into the room and heard the instructions. I was inside the machine and the test started. It was loud and uncomfortable. I was reminded of a conversation I had with my mom years before. I was encouraging her to get another MRI so we knew what was going on with the cancer. She didn't want to. She said it hurt. It was uncomfortable. It was loud. I had no idea and I still don't, fully. I didn't have a chest that had radiation burns all over it and cancer in it. I had NO idea what I was begging my mom to do and now I had a SMALL idea what it was like. I cried.

I also remember the first time I walked into Minnesota Oncology to meet with my new doctor (she would be monitoring me and making sure I was keeping up with my testing). I teared up as I sat in a waiting room with cancer patients and of course, one that looked like my mom. It is amazing to me how many people look like my mom now that she is in heaven. I knew things would be difficult from that day on, but I was ready to fight. Just not sure how far I should go.

My GYN encouraged me to look into prophylactic surgery and eventually having my ovaries removed. I wasn't too sure about that right away. I continued my testing and actually took a little break because it was so expensive. About a year later, I have started the process of a prophylactic mastectomy and am about to journal the whole experience. Get ready to hear it all~the good, the bad, the ugly. : )