Aced this one

Today I had my follow up appointment with my plastic surgeon. He is happy with the progress of my thin skin, but it's still not completely healed. He recommended I wear an Ace bandage, because it seems like whatever bras I have been wearing are pressing against the area and creating pressure. So for now, this is my new favorite sports bra:

But more importantly, I can run! I phrased the question in about three different ways just to be sure:

Can I run? Yes. 

Because you know, I signed up for the marathon. No problem. 

So just to be clear, I have zero restrictions on exercise. Correct. 

Zero. He told me to run with the ace bandage, or nothing if I wanted. Imagine that, running with NO sports bra! Again, because the implants are underneath my muscles, they are very well supported already. But I wouldn't want to risk any chafing damage to my skin since I don't have much feeling, so I'll just stick to the Ace bandage until I'm ready to graduate back to my awesome sports bra. Heck I'll wear that thing through the marathon if I have to (I'll replace it once it gets stinky, don't worry). 

In fact, now that I think of it, I don't think he ever explicitly told me last appointment that I couldn't run, just that I couldn't wear a sports bra. At any rate, I wasn't supposed to be running until 6 weeks after my last surgery, which was actually only the day before yesterday. In the meantime, I've become BFFs with the other machines at the gym, including the treadmill, elliptical, and bike. 

Training starts next Tuesday and Tim and I are off to Miller Beach for the weekend. We should be doing a fair amount of walking, but hopefully I can sneak in a quick run! 

A tale of two surgeries

Considering I've discussed my surgeries, deciding to have surgery, and complications from my surgeries at length, I thought I'd talk a little bit about them. I don't like to dwell on them and want to move forward, but it goes a long way to explain how far I've come. This is a long one folks, buckle in.

The first surgery was a prophlactic double mastectomy, which I had on February 16 at Northwestern in Chicago. Mom and Tim were there, and the entire thing was scheduled to last about 4-6 hours. (See I already forgot, it's been so long!) The plan was to perform a nipple and skin sparing mastectomy, where my breast surgeon, Dr. Seema Khan, would take away as much breast tissue as possible.  The nipple sparing type of surgery was good in my case, because there is a small amount of tissue that remains in the nipple, which would be a risk for someone with cancer. For someone who has cancer, the nipples are removed and are often reconstructed if the patient opts for it. In my case I kept natural nipples and would require no further reconstruction after the implants. The incision is below each breast, rather than the standard incision across the middle of the breast for women who are not keeping their nipples. Cell samples are also taken from the nipple tissue remaining and the lymphnodes to be tested for signs of cancer. There were no reasons to believe they would find anything, but it is essential to know. My pathology report came back a-okay, so as far as I know, I have nothing to be concerned about. Then, Dr. Kim, the plastic surgeon, would go in and place tissue expanders under my pectoral muscles, which we would slowly fill to stretch the muscles. These are what the tissue expanders look like:

Tissue expanders with metal port

Tissue expanders and breast implant cross section. 

When I woke up, I was deflated (physically, and a little mentally). I kept saying I felt like there was a giant sitting on my chest. I wasn't really prepared for this aspect, no one told me I wouldn't be able to breathe normally. In fact, I couldn't breathe completely normally until after my second surgery. There was a lot of pain (bless that morphine drop button), but it was kept under control. I spent one night in the hospital and what they say is true, you can't catch up on your sleep at the hospital. One side was very bruised, and my breast surgeon explained that many blood vessels serve the nipple and it is impossible to tell which is the dominant one. In some large breasted women, the blood supply is not easily determined, so one of them could have been affected. For awhile it looked like a real possibility that I was going to lose a nipple, which would have been pretty crappy. Instead, the nipple scabbed over, fell off, and it looks like a real live nipple underneath!

I also had four drains. Lemme tell you a little something about drains. I hate them. They are the worst. They hang off your body and are impossible to hide and constantly remind you that you just had surgery. Tim and I called them "juice boxes," much to the horror of one of the nurses (it's pretty gross, really). I hung all my drains off of a lanyard and would repeatedly say "Flava-Flav!" Worst bling ever. 

This woman looks too happy to have drains. 

The drain is a long tube with little holes to collect fluid. Like in the picture above, the tube is wrapped around and across the length of your breast. The purpose of the drain is to drain excess fluid, so it cuts down on the swelling. You have to empty the fluid 2-3 times a day, and you're looking for the amount of fluid to go below a certain threshold (something like 30cc per drain). And the drain tube comes out of your body through a hole they create. Let me say that again: they cut a hole in your side/armpit for the drain tube to come out of. The feeling of the drains was so awkward and you have to be extremely careful that they don't get caught on something or that they don't become infected. The mastectomy bra/tank I got at the hospital had little pockets that I could put them in and velcro to the tank, but it's impossible to hide the bulges in real clothes. Not a good time, all around. Oh yeah, and when they finally do take the drains out, they just yank them out from the hole, it's the strangest feeling. It's pretty gross. 

Recovering from the first surgery took many weeks. I have been mostly very healthy my whole life, so I was not used to being limited or incapacitated like this. Mom was here for about 2 weeks, doing everything from cleaning, cooking, washing my hair, and helping me get dressed. I couldn't raise my hands up over my head for a long time. Slowly but surely I was able to do new things. My aunts and cousin came the first weekend and we would go for walks, a little further every day. For a runner, not even being able to walk a mile without getting winded was defeating, but I did get better every day. I am so very grateful for everyone who sent me flowers, well wishes, or came to visit during that time. It meant so much that people were thinking of me! I didn't actually take too much time off of work, and I felt comfortable working from home pretty quickly. I was off the radar for about a week, working from home after that, and back to work after another 1.5 weeks. Sleeping was another story. I was totally uncomfortable, as I'm used to sleeping on my side, and had to stack up lots of pillows and find a good spot. I would wake up with awful back pain, which would thankfully go away once I started moving. I also couldn't wear my own clothes and everything had to be stepped into or buttoned. I wore a lot of Tim's shirts. Putting on "real clothes" was a big deal for me. In fact, every new thing I could do (dress myself, comb my hair, shave my armpits) was a victory. 

Aside from the physical recovery, I also was getting fill ups in my tissue expanders. Each week I would visit the nurses, who use a magnet to find the metal port in the tissue expander (the silver part in the picture above), and using a cartoony like syringe I would get filled with 60 cc or so of saline. The expanders don't look or feel anything like real breasts, and they are really there to just push the muscle and skin to make room for the implants. And push they did. At first I would just have a bit of soreness for a day or so, but the last few expander fills were awful and I was in pain, having trouble sleeping almost all the time. They are hard as a rock and they don't open out the skin quite evenly. They happened to be placed a little high, and as a result a little fold was created under my right breast. I think this may be the cause of the "thin skin" I learned about this week, but who knows.

The second surgery (the implant exchange) was kind of a whirlwind. I went to see Dr. Kim when we thought my expansions were done, and he told me he had a surgery cancellation for the NEXT week. I was going out of town for the weekend and there really wasn't much time to prepare. But I sure as heck wanted those tissue expanders out, so I took the appointment. He warned me that drains were again a possibility, but that recovery from this surgery would be much easier. In fact most women say they feel better when they wake up from this surgery. So on April 18th, I had my implant exchange. When he was marking me for surgery, he started marking my belly, and told me he planned to do some microfat grafting, which is basically a little bit of liposuction, and injecting the fat back into your breasts to smooth out any contours. Not a problem, doc, take it all!

Big smiles, ready for my implant exchange!

Unfortunately, I woke up with 2 more drains (hate those things). I was disappointed, but the surgeon spent a long time fixing some "gnarly" scar tissue, so in the long run it's worth it. He also didn't get to do any of the fat grafting, but from what I understand this is really  for aesthetic purposes, so we can address it down the road. I actually felt so much better when I woke up. The implants are much softer, so it relieved a lot of the pressure I was feeling in my chest, back, and arms. And of course they're breast shaped, so they actually look like breasts, not the frankenboobs I had before with the tissue expanders. Recovery from this surgery was not bad at all, just the damn drains! I did manage to strategically hide them to an acceptable level for Tim's fancy birthday dinner two days later, but thankfully he loves me anyways, even if I have drains. They came out after a week, and I was back to work as soon as they were gone.  

Home with my new boobs and Penny on my lap. All is right with the world. 

You can see why something like "thin skin" is so frustrating for me. In my mind, I'm done. I had my surgery, reconstruction, my incisions look good, and I feel great. I just want to move on. I realize that I am lucky; most women who have a mastectomy are sick. They have to go through radiation, chemo, losing their hair, possibly nipple reconstruction, and are facing a life threatening illness. Their road to recovery is long and they may never be back to "normal". But I am selfish and impatient and want to be back to normal as soon as possible! I've also talked with Tim about this a lot, but I think it's part of my personality to be a "finisher." I like to finish things, whether it's a bottle of ketchup in the fridge, a book, a knitting project -- I just like to be done. I want the mastectomy and reconstruction part of my life behind me, I don't want it lingering like a stale fart. I made the decision, went through the surgeries, recovered (for the most part), and I feel like the hard part should be over. I signed up for the marathon, so I want to DO it -- hopefully that finisher mentality can take me all the way to the end!

Minor setback

Minor setback in Jocelyn-running-the-marathon-land.

I noticed a red spot under one of my new breasts recently, and I figured it was just my skin healing, no big deal. Then the red spot grew and I could no longer ignore it. On Friday I called my doctor's office, sent them a picture, and the nurse prescribed me with an antibiotic, she thought it was an infection. I was skeptical, because I feel great (although I have no feeling in my breasts, so that's not saying much). On Monday, no improvement, so I called again. Thankfully I was working from home, so I went in to meet with my plastic surgeon. 

Turns out it's not an infection, but it's thin skin. I always knew I needed thicker skin (har har), but this isn't good news. I don't think the temporary sports bras I've been wearing are doing me any favors, so he recommended I switch to a surgical bra, and avoid sleeping on that side (although it's my favorite). Definitely no running until he's okay with it. I told him my plans to run the marathon, and he didn't seem concerned. I'm not sure he realizes how much training is involved! In fact, he spent more time looking at how the other breast looked than the one I was concerned about. 

I can't lie, I'm disappointed. I had planned to run/walk the Soldier Field 10 miler this weekend but I'm sitting that one out. My Mom, some nice folks on Ravelry in the Running with Sharp Objects group (why yes I go to my knitting site to get running advice), and my friend Adam (who's running his first marathon in Hawaii next month) talked me down from the ledge. I'm not going to quit before I even begin, so I'm going to do what I can to get cardio exercise and work my legs without any impact on the new boobs. I have a follow up appointment with the doctor next week, where I will be clear about what exercise I can do. I also meet my training team this week, and the training program begins the first week of June. I'll just be honest with the trainer and ask what I should do. I certainly know I can't do this if I'm not healthy, so that's the first step. 

What I did with my ticking time bombs

A few posts ago I talked about the BRCA genetic mutation and what it meant to have it. After finding out that I had the BRCA2 genetic mutation and knowing that my lifetime risk of cancer was as high as 70%, I knew I'd have to do something. The preventative measures available to me were increased screening (check), living a healthy lifestyle (mostly check), chemoprevention drugs like Tamoxifen (which could reduce my risk up to 50%), or surgical options, including a prophylactic mastectomy (reducing my risk by about 90%). Note that even a prophylactic mastectomy cannot eliminate risk, but it is statistically (and intuitively) the most effective way to reduce risk. See the chart here about relative risk reduction: 

I was in no hurry to do anything about this until I was done bearing children (again, I still haven't even started!), mostly because a prophylactic mastectomy seemed drastic, and research indicates Tamoxifen must be taken for 5 consecutive years to receive the preventative benefits, and you are not able to have children while taking it. The prospect of me having children in the next 5 years was not unlikely, so I didn't really think it was a good idea. 

In Sept 2010 my sister was diagnosed with a metastatic tumor on her liver. After that, it's no surprise that things became much more real. I still never imagined that her disease would progress as quickly as it did, and I never envisioned our relationship having an expiration date. We continued to discuss what I should do about my risk--Megan was always very concerned for me. I am so grateful that she had the energy to care about me and help me learn a lesson from her crappy situation. 

Next in the spring of 2011 my Aunt Maureen gave me a book, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions. To say this book was written for someone exactly like me is an understatement. The book very logically lays out exactly what someone in my position (knowing their high risk, but not actually having cancer) is facing and the options available, through the stories of 5 women. Looking back, this is what put the seed in my head for a prophylactic mastectomy. 

I also started becoming involved in Bright Pink, an organization for people like me, at high risk for breast and ovarian cancer, focusing on education, prevention, and empowering young women. Before this, I kind of felt alone. My sister was dealing with a lot, and I didn't want to selfishly detract from that, but what I was feeling was pretty serious too. The organization is based in Chicago, and the day I went in for volunteer training, we actually met the founder, Lindsay Avner. Talk about driven, this woman had a prophylactic mastectomy at the age of 23, because of her own high risk, and started a nonprofit for people like herself in 2007. Hearing about her story, I knew it wasn't such a drastic or crazy thing to get a mastectomy at my age. 

Talking with my sister about getting a prophylactic mastectomy after my first Bright Pink meeting, she thought it was worth it. It seems like an easy decision when the facts are all laid out, but even Megan struggled with her decision to get a double mastectomy. She would never come right out and tell me what to do, although she had been asking me to look into taking Tamoxifen a lot more. I wasn't going to wait until I had kids anymore, I told her my plans, and she told me she was happy to hear it. 

Unfortunately, the seed that was planted grew into a fully formed plan after watching my sister go through a sharp and quick decline. Every time I saw her after the liver mets, she seemed weaker. Conversations turned from planning a trip to Chicago, to her imminent death. It's not easy to talk with your 29 year old sister about how she knows she's going to die. Maybe not tomorrow or next month, but inevitably. I never thought we would lose her so quickly, but she succumbed to her cancer on Sept 1, 2011. After that, there was no way I could watch my sister take her last breath because of this ugly disease and not do everything in my power to prevent the same thing happening from me. I feel somewhat selfish about this fact, but I know I am lucky to be armed with the knowledge of my risks.  On the car ride to the airport the next day, I talked to my stepdad about it, and was 100% convinced that the surgery is what I needed to do. 

When I talk to people about it, I say that it didn't really feel like a decision at all, I can't imagine not doing it. Still, it is a big decision. My sister even waffled a bit when deciding whether or not to get her breasts removed, even knowing she had cancer and she was also a genetic mutation carrier. She ultimately did, but it's not a decision to be taken lightly. It's a major surgery with serious possible side effects. I no longer have feeling in most of my breasts and armpits. I can never breastfeed my children. They look good, but they're not mine. But ultimately, I figured if I had a really high risk of getting cancer at some point and would have to get a mastectomy anyways, why not control the timeline. 

Why I'm not running (yet)

So my last post gave all the reasons I am running the marathon this fall, but the fact is I can't even run yet! I wish I could start my training RIGHT NOW, but I just had surgery and my plastic surgeon would be angry with me. He's the boss so I am listening to him. Below is my boyfriend Tim and I at the Ravenswood Run 5K last Sunday. I'm wearing a shirt, but not a number, because I had to watch on the sidelines. I watched Tim and my friend Adam (visiting from out of town) run the race. It's not quite as fun on the other side, but I did enjoy watching and I have an appreciation for all of the times Tim has met me at the finish line. 

Me, Tim, and Adam at the Ravenswood Run 5K, 04/29/12

Why can't I run? On February 16th I had a prophylactic double mastectomy and reconstructive surgery was on April 18th. (I would like to stress that I'm not sick, this was purely preventative! More on the surgery another time.) The plastic surgeon recommends 6 weeks with no running, lifting, straining, etc, which was not a problem for me after the first surgery, since I could hardly walk up a flight of stairs without getting winded. The mastectomy really took a lot out of me and it took a lot of stretching and walking to get myself back to feeling normal. However, after the reconstruction surgery I actually felt better than when I went in, because in the time between my mastectomy and my reconstruction, I had these tissue expanders which "made room" for my implants, and they were very uncomfortable, to say the least.  You can get an idea of what the TEs are like here. I feel great after this surgery, and I am antsy to get my life back to normal. 

Now I just have to wait for my incisions to heal and the first day I'm allowed to run again is May 30th. I can't wait! The weather is getting nicer, I want to be outside, and I am so jealous every time I see other runners. But for now I am relegated to walking and the elliptical. I can't do yoga yet, I am still nervous about bearing my full weight on my chest muscles. There's plenty of things I can be doing though, especially eating right (carrying around extra weight is never a good thing, and it will help my pace!). There's also the Soldier Field 10 miler that I signed up for on Memorial Day weekend. I signed up when I had no plans of surgery, but I am still planning to do the race, except I'll have to walk it. I have to get my legs used to working hard again and setting aside long periods of time to work out. Walking 10 miles though, I feel like that's going to take forever! 

Thankfully, the Bright Pink training program doesn't start until June 4th, so if all goes well I should be right on schedule. And for now....the dreadmill is my friend.