My thoughts

Very recently, Melissa Etheridge, a breast cancer survivor herself, made some rather interesting comments about Angelina Jolie's recent announcement.  Below is a link and MY thoughts.

http://www.cbsnews.com/8301-207_162-57589777/melissa-etheridge-angelina-jolies-mastectomy-decision-was-fearful-not-brave/

Melissa Etheridge is correct. Angelina Jolie, myself and thousands of other women are fearful. We, the carriers of the mutant BRCA gene are afraid of cancer - well at least I know I am.  I watched my mother as well as my paternal aunts and grandmother battle cancer. When I was 26, I watched my aunt Karen finally succumb to the cancer she bravely fought for years. Damn straight I'm afraid of cancer.

To say that MY choice to have a prophylactic double mastectomy was a fearful choice is ignorant. I was ridiculously over-educated about my options. I've said it before but my reality was always a when, not if I get breast cancer.  I met with numerous doctors and a genetic counselor prior to making my decision.  I did my own research. I prayed often. I called my aunt Sheryl and spent a long time chatting with her about it - thanks again for that Sheryl! 

Melissa Etheridge is wrong though, My decision wasn't one made out of fear.  My decision was one of peace. My decision was one of strength. My decision was made as a wife, a mother, a daughter, and a friend. My decision was an educated one - based upon my family history, my personal risk factors, and recommendations from my doctors. My decision was to be proactive - to ensure that breast cancer didn't make decisions for me.  I wasn't willing to take a 90% chance that I'd put Jay and Alex through chemo or worse.  My decision was to take control of my breast health. My decision was to have - what I believe to be an inevitable surgery - on my schedule, on my terms.

I made a choice - a pro active choice about my breast health. I'm no longer afraid of breast cancer. I went from a nearly 90% risk to less than 1%.  I will never again cry myself to sleep worrying about the results of my most recent mammogram. I will never again lose sleep when they call me back in for a follow up because they found a suspicious spot.  

So, Melissa Etheridge may say I made a decision out of fear. I say my decision has made me fearless.

4 weeks post-op

I'm officially 4 weeks post-op! At this point, I'm able to do so much more than I imagined. I can dress myself, do my own hair and shower by myself. I can get Alex dressed - if he cooperates.  I can go up and down the stairs without having to take a break at the landing.  I still cannot pick up Alex yet, or drive, walk Ollie, or grocery shop without assistance. I really miss wrestling with Alex and date night with the handsome husband.  Side note: as soon as this drain gets pulled, I have every intention of taking you people up on all your babysitting offers so that Jay and I can go on a date!  Have I impressed you with the list of what I can do??? I'm getting better and stronger every day!

I still have in my abdominal drain. I hate it more than ever.  I called and pretty much begged to have it taken out on Thursday but the nurse told me what could happen if it comes out too soon. It's gross. Ok, fine, I can deal with it.   

Some people have asked about the drains. I have JP drains. Basically, i have a tube coming out of my hip that leads to a little grenade shaped bulb.   The grenade is what creates the suction, drawing the extra fluid out. The vain part of me hates going out in public with the drain. I try to hide it by pinning the grenade portion to the inside of my shirt but it really uncomfortable, especially with it being so warm. So now I clip it to my pants and hope my shirt covers it.   I originally had 4, then 2, and now this 1.  Jay strips the drain nightly (to ensure there are no clots) and then measures the output. The body can absorb 30 ml a day naturally so the doc will pull the drain when I'm below that mark for 3 days. I can't wait!

The meal train is officially over on Monday. I'm so incredibly thankful to everyone who prepared dinners for us. Also, a very special thank you to Hannah. Hannah started the meal train and also had all the meals delivered to her home (so I wouldn't feel obligated to get up and make conversation, especially when I could barely get out of my chair, let alone come downstairs). Every night, she delivered meals to us on her way to a soccer game or other event. Hannah, thank you so much, I owe you big time!

So now I need to get back to cooking for my boys. I'm excited because I love cooking but a little nervous. I will need to be smart about it and have Jay or the babysitter set out the cookware because I either am not allowed to reach that high or bend that low. Mostly, I just need to plan and remember that a frozen pizza is just fine once in a while.

Mentally, I'm doing well. I'd be lying if I said its all sunshine and roses. I have my moments. This whole experience is hard, very humbling, and a little traumatic. I've had to give up a lot of control, which for me, may have been more difficult than the pain. Overall, I'm really pleased with how far I've come in 4 weeks!

Slowly but surely

Sorry it has been awhile since my last post. The past week has been fairly busy with doctors appointments, my mom leaving, Berkley visiting, etc.  That and I didn't feel much like it.

I had my post op appt with my plastic surgeon last week and as usual it was an entertaining appt. My plastic surgeon, Dr. Cacciopo, is amazing. Women travel from all over the country to have him do their breast reconstruction. He is considered a leader in doing the DIEP flap reconstruction that I had. Dr. Cacciopo isn't exactly a man of many words and a little socially awkward so I'm always entertained when I see him.  I do want to point out that he is an amazingly skilled surgeon who is also very kind and will answer a zillion questions. So at my appt last week, it's the usual get half naked and wait for the doc. When he comes in, he asks about pain control, drain output, etc. and then he asks if he can take a look. To me that was just hilarious and I started giggling. I mean really? You spent 12 hours in surgery and this is a post op appt, of course you can see them. His reaction was even better!  He said "wow, they look great! Yours may be my best ones yet!"  I mean, come on, what girl doesn't want to hear that!  So, it seems my frankenboobies are healing well.  As the surgical glue falls off more and more, I can see that the scarring isn't nearly as bad as I thought and personally, I also think they look great.

As for the drain, I still have the one in my right hip and it will remain until the output decreases.  I'm definitely not happy with it but I know it's helping so fine, I'll deal with it AND whine about it occasionally.  This drain is especially frustrating because while it goes in my right hip, it runs all the way across my lower abdomen. It really impacts my ability to bend, twist, etc. ok, whining over.

Dr. Cacciopo also cleared me to start reaching a bit more. I'm allowed to wash and do my own hair.  It definitely hurts but it's progress and a little independence so that's exciting!  The downside to doing more is the muscle spasms that come along with increased use.  This is where the Valium comes into play. When I was given a prescription for 40 pills and a refill I thought it was crazy excessive. Now that I've really gotten some pretty awful chest muscle spasms, I get it!  

Other than the drain and muscle spasms, I'm doing much better than I anticipated at this point!  I've been able to go to the grocery store and zoo - yay for wheelchairs! It was so nice to get out of the house.  Mentally, I have the occasional "holy crap what the hell did I do to myself" moment but then my little boy walks in and I remember that a few scars and some temporary pain is no big deal....breast cancer won't steal me from him.

Not easy

The past few days have been a little rough.  I've especially been struggling with reducing the pain meds and the consequential pain. In all honesty, I probably tried to cut back too fast and now I'm paying for it. 

Sleeping has also been difficult. I rotate between the bed and the recliner most nights. I sleep with more pillows than you can imagine.  Side note: hospitals throw away pillows after use (at least mine does) so they will send them home with you if you want. The extra pillows have been awesome. They also sent home all the bandages and tape I'd need, thermometer, ointments, a reacher tool, etc.  Anyhow, sleeping - not easy.

I have a little cabin fever. I've read a ton of books, watched movies, I sit outside for a little everyday too but it's still been a big change from my pre-surgery life. So I had my first adventure out of the house Saturday night and it wasn't to the hospital. I had to get out of the house. Naturally, I went to Walmart. Jay and I got a few groceries. I used one of those electric cart thingamajigs. I won't lie, they are fun to drive but they don't corner very well. 

Since I've been whining a bunch in this post, I should point out that the help of friends and family has definitely made it easier than I expected. I knew people said they'd step up and help but holy cow, you people are awesome!  My mom has been a great help too, helping with Alex, doing laundry, dishes, etc. Our friends (a few kind strangers too)  have been awesome helping with meals. A special thank you to Adam for mowing our lawn this weekend!

2 weeks

Surgery was 2 weeks ago. I certainly have my ups and downs but overall, I'm pleased with my progress!

I can do the important things like brushing my own teeth, using the bathroom by myself, and going up and down the stairs.  I still can't do my own hair (a pony-tail from Jay Perez is interesting), I still need help showering and I can't lift my arms above my head (that'll be awhile). 

Had a follow up appt with my breast surgeon yesterday. She ogled my frankenboobies like a high school boy. She really liked how they are shaping up. The left one is really doing great, not much swelling or bruising left. The right one had a bit of skin breakdown but they expect it to heal up well with time. It also has a bit if swelling and bruising still.  My abdomen is also healing really well!  The 16 inch scar is right at the panty line and is already fading well.  The new belly button is also quite nifty. 

I see my plastic surgeon on Tuesday and he will give me a better idea on follow up appts and a possible revision surgery.  Apparently I had quite a bit of swelling towards the end of the surgery so they left some extra skin to accommodate. But, I will know more on Tuesday. 

Otherwise, I'm doing well. Pain is fairly well under control. I've been working on cutting back on the Vicodin. When I left the hospital, I was taking 2 every 4 hours. I'm slowly working myself down. 

I have my moments where I feel bad for myself, mostly guilty for how much of my slack Jay is having to pick up for me. Jay doesn't let me wallow for long.  I certainly get frustrated at times but overall, spirits are good and I'm getting better every day!

Thanks again for the well wishes and especially to those who have prepared and/or sent meals. They have certainly made life a bit easier!

Oops

I fainted in the shower last night. Oops. I swear I hadn't been overdoing it. I also swear that I was plenty hydrated. Luckily Jay was right there and I didn't crash or bang into anything making the situation any worse. I felt it come on and told Jay that  I might pass out. Apparently I did, quickly.  I felt awful, because naturally, I scared Jay. I hate it when Jay looks at me like that -full of concern and a little fear.  I'm sorry babe, I never want to put you in that position.

Once again, I likely overestimated my abilities and underestimated the toll that a 12 hour surgery took on my body.  Needless to say, passing out in the shower scared me a bit too. Today, I haven't left my room.  Luckily, my master suite is giant and is now functioning as not only my bedroom but also my living room, Alex's playroom and our dining room. 

Otherwise, I feel ok.  I sleep a lot. My incisions (about 15 inches across my lower abdomen and too many to count on my breasts) are healing well and a bit itchy.  Hopefully tomorrow the doc can get me in to pull one of the drains. The drains are still a pain. The breast drain has little output and is more painful so hopefully this happens tomorrow!  I have a feeling that the remaining hip drain will stay until my checkup on the 11th. 

Super nice to have my little man home. He understands that mommy has lots of "owies" and that he needs to be gentle. He is 2 and forgetful so I always have a pillow around for protection.  An Alex hug with a pillow between is just as good as one without!