Anna 2.0 - Post 3

Here's a very asymmetrical selfie on my way to my first filling appointment

Going the implant route on one side and the DIEP flap route on the other has given me an interesting perspective. The flap surgery was hard. The initial recovery was hard. It was a LONG time to be in the hospital. Physically it took a lot out of me. But emotionally, I think it was easier because from the first time I took off the compression bra, I could see the results. I had breasts that looked pretty normal, minus the nipple (where the nipple would be is a flat round piece of skin that used to be part of my tummy) and one incision underneath the breast. They were bruised and sore, but really didn't look that bad. They felt like breasts. It was a done thing. Having to go back in for another surgery was really hard on me physically. I don't think a normal implant reconstruction would have been so hard, but back to back surgeries were exhausting. And emotionally I know that the implant process has been harder.

If you aren't familiar with implants, basically during surgery the doctor puts an uninflated balloon (called a spacer) under the muscle. After you heal a bit from the surgery, they start filling the spacer with saline. Before the filling process, it's a hot mess. All wrinkled and bunched up and hard and lumpy. My plastic surgeon compared getting an implant to an uninflated beach ball.

The first time I saw myself without all the dressings and compression bra on, I sat and cried for almost an hour. It was bad, y'all. Mostly because it wasn't what I had planned for, what I was expecting. But it really is getting better. I've been filled three times now, and although I'm still a bit asymmetrical, it's getting better. Dr. Hsu promises that it will all be okay eventually.

The filling process is an experience all in it's self. I have quite a bit of feeling in the flap side, but the implant side has almost none. When I get filled, basically the stab a big fat needle through my breast into the spacer. And then I lay there for 15 long minutes while a nurse squeezes saline from a bag (like an IV bag) through the needle. It doesn't really hurt while she's doing it but I am afraid of needles and can't bear to watch. I usually babble as fast as possible about anything that comes into my head. Dr. Hsu's poor nurse probably knows more about me and my kids than anyone would want to.

People said that this process was harder on them emotionally than they expected. I would have to agree. It's difficult to look at myself and not feel like Frankenstein's monster. The spacer is rock hard. Snuggling with my kids or holding the baby doesn't feel right on that side.  Bras don't fit right. Clothes don't fit right. It's frustrating to finally get feeling good and then go back in to get filled again and hurt again. Over and over.

But even though it's been hard, and hasn't gone the way I planned, I am still 100% sure that I made the right decisions for me and for my family.

That's all for now. I'll be having another two surgeries - hopefully one in October to replace the spacer with the permanent implant, and one in December for all the final reconstruction touch-ups, so I will post more about them later.

Anna 2.0 - Post 2

Sorry to leave y'all hanging. I had most of this written, and then life (in the form of 4 kids, a husband, laundry, and dishes) happened before I got it posted.

The plan worked out like most plans do - that is, not at all how you planned them to.

Being BRCA2 positive put me at about an 87% chance of having breast cancer at some point.  Surgery isn't the right path for everyone. Even people who are positive. But I KNEW it was the right thing for me. Maybe I have a different outlook because my mom died when I was so young? Maybe it was because of Charlotte's experience? I don't know but it was right for me.

Even knowing that, sitting there in the operating waiting room with Travis was one of the scariest moments of my life. I kept thinking about how healthy I was. How I didn't have any current health problems, any symptoms. It was hard to sit there and wait to be called in for surgery that maybe I didn't even need to have. It was hard to keep from freaking out and falling apart. I'm so grateful for my husband being there. He kept me sane.

DIEP flap reconstruction is a fairly involved surgery. The breast surgeon did her part in about 2 hours. She sliced each breast open and removed the nipple and all of the breast tissue. (I keep imagining a raw chicken breast looking chunk sitting on a counter someplace. Is that crazy?)

Then the plastic surgeon took over. His part took about 8 hours. He had to use a microscope to link up blood supplies from the tissue he took from my stomach and placed in my breasts. And he had to give me my tummy tuck.

He had to give me a new belly button since my old one was part of the saggy skin he cut off. My belly button is kind of like an under-mounted sink - he made kind of a cone out of skin and tissue and before he sewed up the belly incision, while everything was open, he cut a hole and sewed the cone to the inside. Eventually, when the scars fade and everything heals, it will look like it's always been there. Except that it feels about 3 inches too high, which is weird. (I guess that's what you get when you have 4 kids? Your bellybutton sags way down?)

After surgery I spent the rest of Monday, all of Tuesday, and most of Wednesday in the ICU. They moved me to a regular floor for Wednesday night and Thursday, and I came home Friday. I had 6 JP drains in, two under each arm and two below the incision in front. JP drains are awful. With 6 of them, all I could do was wear them on a lanyard around my neck. I felt like I had tubes coming out of me everywhere. I was constantly afraid that I'd snag a tube on something and rip one out. I realize they are a necessary evil, but they are dreadful. (After 2 weeks, they took out 5 of them. Going from 6 to 1 was a DREAM! You can hide 1 under your clothes and feel reasonably normal.)

Eleanor had Megan, Jared, and Kate at her house (she kept them for 3 weeks total, because she's amazing like that!). And my wonderful friends Amy and Jen took care of William all week. I couldn't have done without them.

Early Sunday afternoon we noticed that one of the breasts didn't look right, and I ended up in the ER. It had developed a blood clot, and my plastic surgeon came back in and did another surgery. The flap wasn't salvageable, so he had to put in a spacer (the first step in doing implants) in that side. I spent Sunday night and Monday in the hospital.

My friend Holly was to fly in on Sunday afternoon. Travis was going to pick her up, but we were nervous about leaving me here alone (I don't do well on pain meds) so my friend Tammy was planning on coming over to stay with me. When we realized that we had to go to the ER, Tammy ended up taking William over night and going to the airport to get Holly instead. I'm so grateful for her, for just jumping in and helping when we needed it.

Ever since I came home the second time, things have slowly been getting better. Holly was here for a week, taking care of me and William. It was great to have her here and I'm grateful for her help. We looked through old scrapbooks and yearbooks and found lots of forgotten pictures of people from high school. We ate Ritters and hung out in our pjs. We didn't do any mud masks, though. That'll have to wait until next visit.

After Holly left, Suzanne flew in. She helped me get ready for the kids to come home. I went to the Doctor and he took out 5 of the 6 drains. That's really when I started feeling better. It was too hard to do anything with all of them in, but one felt totally manageable. The kids came home and Suzanne stayed for another week and a half. She just left and although I don't feel anywhere near 100%, I am functional. Tired all the time, and sore, and I still have to be careful how much I lift, but overall pretty good.

Anna 2.0 - Post 1

It's been 4 weeks since my surgery. 4 weeks that have seemed very very long and at the same time, very very short. It's been rather rollercoaster-ish, lots of ups and downs, but overall, I am pretty darn happy with how I'm doing right now.

So, since mostly this blog is written as a journal to myself and my kids, here's a little background on why I had surgery and what kind I had and all that. Y'all can skip over this if you want to since I've been blathering on about it for the past year or so.

I have a huge family history of breast cancer. Like huge-huge. On my mom's side. My mom and aunt and grandma all died from breast cancer and other family members have had it as well. So a few years ago, my sister Charlotte got tested for a gene mutation that has been linked to breast cancer. She was positive for BRCA2. She opted to have a prophylactic (preventative) bilateral (both sides) mastectomy (breast surgery). Only it didn't turn out to be prophylactic. They found a lump while going through her tissue after surgery. She wasn't any older than I am now. Kristin and Alison also tested positive and decided on courses of treatment.

I tested positive too. It was a few months before Kate turned 1. We knew we wanted to have another baby, so my oncologist said that we'd better hurry up. With Megan and Jared it took about 6 months before we got pregnant, and with Kate it took more than 3 years. We didn't know what to expect, but I guess Heavenly Father really wanted William in our family because it took exactly 3 weeks from the day we started trying for us to get pregnant with him. He was born in February, and we scheduled surgery for July. We wanted to do it the same year for several reasons. Financially, it made sense since we had already met our insurance out of pocket max for the year. Physically it made sense because of the type of reconstruction I wanted (more about that later). And that seemed like the perfect window for the baby - we hoped he would be sleeping through the night but not yet mobile (that worked out exactly right).

My OB (who I love - she's wonderful and has been a great support through all of this) recommended both my oncologist, Dr. Hsu (pronounced "shoe") and my breast surgeon, Dr. Lee. Dr. Hsu is a little tiny, soft spoken man who really knows what he's talking about when it comes to cancer research and BRCA and has no idea why I wanted so badly to have a fourth child. But I like him anyway. Even if I do feel like I flabbergast him sometimes.

Dr. Lee is wonderful. She DOES understand where I'm coming from and I have enjoyed working with her the most.

Dr. Lee recommended a plastic surgeon, Dr. Hsu. (yes, both my oncologist and plastic surgeon have the same last name. That's where the similarities end.) He has been great to work with as well. All three doctors felt like I was a good candidate for DIEP flap reconstruction, so that's the route we took rather than doing the more traditional implants. In DIEP flap reconstruction, basically they take your excess tissue from your stomach and use it to reconstruct the breasts. Since I had a baby a few months ago (plus 3 previous pregnancies ;) ), I had plenty of tissue to work with.And basically you get a tummy tuck when they remove all the belly tissue.

So that was the plan. DIEP flap reconstruction, scheduled for July 15. A week in the hospital after surgery, 6 weeks of recovery, and then later a surgery to do the nipple reconstruction.

That was the plan.

What being positive for BRCA2 means to me

My wonderful in-laws sent me some flowers today. Aren't they gorgeous?

I got my test results back this week, and I am positive for the BRCA2 gene mutation. Being positive for BRCA2 means that my chances of getting breast and/or ovarian cancer are really, really high. Pair that with our crazy family history, and the chances are even higher.

This whole experience has been hard on me. Hard to think about the very real likelihood of getting breast cancer in the near future (Isn't it funny how 10 years ago, 10 years seemed like FOREVER. Now, 10 years seems like no time at all?). Hard to think that my mom wasn't that much older than I am when she was diagnosed. Hard to think about Megan only being a few years younger than I was when my mom died. Every time I had to talk to the doctor or anyone else about it, it hurt. It was hard to decide if I wanted to be tested, and it was really REALLY hard to wait for the results.

Since getting the news that I am positive, my emotions have run the whole gambit. Anger, depression, denial, apathy, extreme cookie craving....to peace.

Here's what I know now.

• It's better to know than to wonder.
• I can be proactive.
• Cancer is just a word, and BRCA2 is just a jumble of letters. They don't define me.
• Just about anything can be cured (at least temporarily) by a Georgette Heyer book and a bag of Milano double dark chocolate cookies.
• Doing service helps to keep me from dwelling. 

I go in for some testing in a couple of weeks (and every 6 months after that), and assuming everything looks good, we won't be doing anything for a while. Surveillance is the name of the game right now. In a couple of years we'll look at making some more permanent options.

Thank you to everyone for your prayers and positive thoughts and help and support. I really appreciate it!