TOMORROW!

Like many, I first heard about the BRCA “Breast Cancer gene” when Angelina Jolie used the New York Times to announce her decision to have a bilateral prophylactic mastectomy after she was genetically identified as a carrier of the BRCA gene mutation. She told the world that she’d had her own breasts removed because they were ticking time bombs for breast cancer. 

So maybe some of the world mourned Angie’s boobs for a minute, but this was the right choice for her. And man, did you see her in Maleficent a couple years later? Her plastic surgeon got it right!!!! 

But I digress. 

Angie’s announcement started a world-wide conversation about genetic testing. 

How much knowledge is TOO much knowledge?

Are we playing God with all of this?

And what would you do?

But more importantly, women around the world became empowered with the knowledge that they have options! We can have genetic testing and make informed choices about our bodies to reduce our risk of getting some types of cancer. 

Then it got personal. When breast cancer crashed into our lives for the second time, my mom’s physician recommended genetic testing. Mom tested positive for the BRCA mutation, and then I tested positive as well. Without hesitation, I took the radical route and chose the prophylactic mastectomy. The adventures (and misadventures) of that journey haven been chronicled in this blog.

Not everyone who tests positive for the BRCA mutations opts for the radical surgical options. A BRCA positive diagnosis can still be empowering without surgery because it allows for insurances to cover more frequent mammograms and additional cancer screenings. Early diagnosis is key to surviving breast cancer!

The lesser-known risk that comes with a BRCA mutation is an elevated chance of getting ovarian cancer. The average woman has about a 2% chance of getting ovarian cancer in her life. Someone with a BRCA mutation has something more along the lines of a 40-60% lifetime chance of getting ovarian cancer! And ovarian cancer is ugly and hard to treat. Early detection drastically increases the survival rate, but ovarian cancer is often detected late, at a point when successful treatment options are limited. 

The answer? Take out the ovaries, too! That’s the procedure I will have tomorrow. I am opting for a slightly lesser invasive surgery than originally planned. We’re only removing some of the lady-plumbing, but it will get rid of the hormone-generating cancer-makers that the ovaries can be. 

As a part of the procedure, I am also having some other annoying growths removed that have been wreaking havoc on my system. They have been biopsied and are benign, but will thankfully be evicted along with the ovaries. 

I am not worried about the procedure. It’s outpatient, it’s laparoscopic. It will be fine. I’ll be down for just a couple weeks. I am also not worried about losing my eggs, and thus the ability to have any more biological babies. That ship has SAILED and I am very content with the children I have in my life already. 

I am, however, TERRIFIED of the symptoms that will come after the surgery, the symptoms that come along with surgical menopause. Normally, a woman’s estrogen tapers off gradually. Removing the ovaries removes the estrogen COLD TURKEY! 

BRCA-informed doctors have mixed opinions about oral estrogen and other hormone replacement therapies. Why put estrogen back in your system when the goal of surgery was to remove the cancer-causing organs and the hormones they produce? We're going to try and figure out what makes the most sense for me.

Without ovaries and their estrogen, it’s an instant trip to old-ladyville. Hot flashes and mood swings are nearly guaranteed, as well as other other unpleasant things like loss of libido and depression. 

YAAAAAAAASSSSSS! Par-tay time! 

(In case you missed it, that was me trying to pretend to be excited about all of this.) 

Snark aside, I am so incredibly thankful that I can face my elevated risk of cancer empowered. I am grateful to have informed, forward-thinking doctors who support and educate me on this journey. I have so much gratitude! I know that while my family will have to take care of me now for a couple weeks, (and then deal with my mood swings for a few months after!) they WON’T have to care for me through chemo and radiation and all of the scariness that comes with breast and ovarian cancer. 

Tomorrow morning, 11AM. Please send positive juju in whatever form you believe in sharing it. Low-sugar desserts and Netflix recommendations will also be greatly appreciated ;) 

Do you know your risk of hereditary cancer? The community and information at FORCE, www.facingourrisk.org, has been an incredible resource! Please don’t hesitate to chat me up if you would like more information. 

Plan? Plan? Who's got a plan?

It’s been over four years since I first started this blog to document my BRCA journey. Updates have become few and far between, mostly because there hasn’t been a ton to share. 

I spent the first two-thirds of 2018 looking forward to December, when I would be able to finally get these ridiculous, awful fake boobs OFF of my chest. 

I am SO TIRED of shirts being tight, and tired of buttons popping open. Any time I wear something with even a slight scoop neck or v-neck, I am paranoid about showing cleavage and looking inappropriate. And it’s not just a physical/superficial/appearance issue. Because of the weight of the implants, I don’t sleep well if I don’t have a mountain of pillows to prop me up. My shoulders always hurt.

I didn’t want implants this big. And I have said numerous time that if it came down to keeping THESE boobs, or going back to the post-mastectomy flat chest of nothing, I’d choose flat in a heartbeat.

I had a consultation with the plastic surgeon in September, and unfortunately it was determined that I won’t be having reconstruction this year, either. Complications, shifting priorities, advice and pressure from multiple doctors, questionable growths with thankfully clean biopsies - it’s all helped determine that now is STILL not the time.

Carrying the BRCA gene mutation means an elevated risk of breast cancer, but it also means a high risk for ovarian cancer as well. My doctors would like me to have my ovaries removed before I have my boobs fixed. So instead of a breast reconstruction in December, I am scheduled to have a hysterectomy (removal of the uterus) and an oophorectomy (removal of the ovaries.)

These are fairly standard procedures with few risks, but it will involve some down time. It will also come with some unpleasant side effects. Most women receive hormone therapy after this surgery to help with the symptoms of surgical menopause, but because the cancer I am at most risk for is hormone induced, I won’t be able to take the hormones to help. What I have to look forward to:

- Mood swings
- Depression
- Night sweats
- Hot flashes
- Dryness. Everywhere.
- Loss of libido
- Forgetfulness 
- Fatigue


Wahoo!


It’s difficult to have a good attitude about any of this, but I'm trying.

I remain incredibly thankful to have the knowledge of my elevated risk for these types of cancer, and I am thankful for the preventative medical options I have. I don’t regret my decision to take action to significantly reduce my risk of having breast cancer.

I just really want it all to be over. 

Excuse me, but this isn't quite what I ordered...

So you know the adage, "If you don't have anything nice to say..."

That's where I have been for the past 9+ months since my reconstruction surgery. 

I started this blog to share my BRCA journey with others, to share the non-movie star version of choices related to hereditary breast and ovarian cancer.

I wrote in a previous post that despite hesitations, I finally opted to have breast reconstruction after 2 years of having nothing on my chest post-mastectomy, simply because I was tired of stuffing my bra to make shirts fit right. I wanted to be able to wear a bathing suit with confidence. I wanted to not have to explain my inverted chest to anyone. And while I had enjoyed the freedom of the flat chest (wahoooo for spaghetti straps!), I knew it was time to be put back together.

Unfortunately, it didn't turn out as planned. 

I asked for something small. For maybe some nice, full B-cups, and this is what I got:

Immediately after surgery, I knew it was too much. I read about healing and swelling and having patience, but I still just knew, B-cups, these were not! Two months later when I went to buy new bras, the cold hard truth was revealed: 36DDD.

I saw the surgeon to express my disappointment. She told me my options - I could have surgery again to pull the implants out immediately, and then wait 6-9 months to heal before trying again, OR keep them for 6-9 months, and have the entire reconstruction redone in one procedure. 

I opted to keep them, which has only reinforced my opinion that it's just too much. I know plenty of ladies pay $$$$ to have DDDs. People often use words like 'proportionate' to describe what was given to me, but I'm just not happy with them. Shirts are too tight and even simple V-neck or scoop neck tops end up looking sleazy because there is just SO. MUCH. TIT. 

In the end, it's my body and I have to be comfortable in it. And these things are so NOT comfortable. If I had to choose between keeping these DDDs and the post-mastectomy NOTHING, I'd rather go flat. 

Thankfully, I don't have to make that choice, and I get to have a re-do on the reconstruction. This time last year I was so excited about the potential of finally being DONE. The idea of more procedures doesn't excite me, but I am ready to try again.

Third try's the charm?

Tomorrow's the Big Day! (But hopefully not TOO big!)

One more sleep, less than 10 hours. Hoping this will be the last procedure.

I'm about to start talking about breast size. Check out now if you can't hang.

You've been warned...

While getting ready for the Fresno Jingle Run 5K on Saturday, an incident with a sports bra sent me into an absolute panic attack.

What if I wake up and the news ones are TOO BIG?

Those of you who have known me for 8-10 years remember when my boobs were bigger than a normal-sized person's head. I spent the majority of my adult life wanting a breast reduction.

Now, having a mastectomy wasn't quite what I had in mind, but that's how life happened and ultimately I certainly got my reduction! I went from having a DDD or H-Cup down to spending the past two years as a negative A-cup.

I was originally supposed to have reconstruction at the time of my mastectomy, but things didn't go quite right and I had to have the tissue expanders removed and halt the reconstruction process. Now two years later, it's finally time to get my new implants.

For tomorrow's procedure, the doctor said she wants to make me look natural, she wants the new breasts to fit the shape of my body and the space that was left after the mastectomy.

She's the expert and I trust her judgement, but in my last appointment she mentioned something about not quite filling a D cup, which took me aback, because I was thinking something along the lines of a nice, round little B. I've enjoyed these past two years of tank tops and spaghetti straps and gap-free button up shirts.

I don't want to have anything sizable on my chest, ever again!

I got to talk to her again today, and she offered me some reassurance, but I'm still a little worried. I had felt pressure, like this is a once-in-a-lifetime opportunity to get PERFECT boobs, and what if it doesn't go right?!?! Will I be stuck with big, floppy lumps that I hate??

I have to remember that they're just place holders - something to fill my shirt and make my clothes fit right. I wouldn't even be doing this if the mastectomy/first reconstruction attempt hadn't left me somewhat lopsided. Boobs aren't all that important to me, really. But since I'm doing it, I do want it done right.

I would really like to get this all over with. People have asked if I'm having nipples reconstructed or getting some tattooed on, but all of those things typically happen in later procedures. I don't want any more procedures. I really want to have this one last surgery and call it good.

There is one potential complication that could arise tomorrow. There is a chance that skin flaps that were left after the original attempt at reconstruction won't be large enough to hold the new implants. If that is the case, the doctor will have to place the tissue expanders in again and we'll have to wait while my skin stretches. This would unfortunately mean ANOTHER procedure in 3-4 months.

I've got an hour left before I can't eat or drink anything until surgery. I have to check in at 6AM. NO COFFEE TOMORROW MORNING?!?! That's just not fair. Please keep your fingers crossed for me. I really just want this done!

30 Days!

It's ALMOST TIME! Just thirty days until my reconstruction surgery. I was hesitant and nervous for a long time, but now I'm finally getting excited!

Those of you who follow me on Facebook might remember the story of Kansas running in the room, screaming about how Patten had broken her (cheap, Dollar Tree) Barbie Doll. She had pushed in the thin plastic of the doll's boobs, and Barbie suddenly had "innies" on her chest instead of "outies!" 

Kimberly made a bad joke and said, "Hey Susan! It looks just like YOU!" 

While it was harsh, and totally too soon, it was ABSOLUTELY TRUE! This is pretty much what I look like without a shirt!

BUT HEY EVERYBODY!!!! IN THIRTY DAYS I WILL HAVE BOOBS AGAIN!!!!

Uhhhhh.... thanks for that bit of TMI, right? When I first made the decision to be tested for the BRCA mutations that signify an elevated risk of breast cancer, I knew that I had to share my story out loud. 

Most people's knowledge of BRCA is through the story Angelina Jolie told quite publicly. And by telling her story, Angelina raised a ton of awareness about hereditary cancers. 

But I chose to tell my story because I'm NOT a movie star. I'm a mom, a teacher... just an every day girl going through the exact same thing. I decided to share because I wanted others to know that you don't have to be rich and famous to have some control of your body and your health.

According to the Komen foundation, in 2016 there will be an estimated 246,660 new cases of invasive breast cancer in women, and over 40,000 breast cancer related deaths. 

The average woman has about a 13% chance of getting breast cancer in her lifetime. Women with the BRCA gene mutation have up to an 87% chance of getting breast cancer! A simple blood test or mouth swab can empower women with powerful knowledge of these elevated health risks.

Men can also have BRCA mutations. Their risk of breast cancer increases from .1 percent to as much as 8 percent. 

When I found out that I carried a BRCA mutation, I chose to have a bilateral mastectomy. This choice reduced my risk of getting breast cancer from 87% to less than 1%.

Prophylactic surgery may not be the right choice for everyone. A BRCA positive diagnosis can still be empowering because it allows for insurances to cover more frequent mammograms and additional cancer screenings. Early diagnosis is key to surviving breast cancer. 

Both brightpink.org and facingourrisk.org have been tremendous resources for me as I've gone through this journey. Please check them out if you'd like to know more about hereditary breast and ovarian cancer. Also, please don't hesitate to message me if you have questions or would like to learn more about my own journey.  

On hesitations...

I went through an airport full body scanner earlier this week, and it flashed an alert on the screen because it appeared that I had something stuffed in my bra. 

Which I did. 

I whispered to the TSA lady, "I stuff my bra because I had a mastectomy and don't have any boobs!" She giggled a little and gave me a gentle pat down in the area that alerted, then sent me on my way. 

I met with the surgeon last month, and it looks like we're good to go for reconstruction in December. After two years of being boob-less, I am SO ready to stop stuffing my bra!

I do have hesitations. After the complications that happened with first attempt at reconstruction, there is a part of me that thinks I could be content with a life without boobs. 

I shared early on in this process that I never once hesitated in my decision to have the mastectomy. As soon as my mom found out that she carried the BRCA gene mutation, I knew that I wanted to be tested. And at that point I also knew what I would do if my own results came back positive. 

I never hesitated because Cancer is a beast. Giving up my boobs was certainly worth the peace of mind of knowing that breast cancer won't get me! 

I never hesitated because I knew I didn't want to go through the horrors of chemo and radiation. I am so thankful that Mom has made it through her multiple battles with cancer, but I have witnessed first hand how tough it is on a person's body and soul.

I never hesitated because I want to watch my babies become adults and share in their future! 

I never hesitated because I have so much in life I still want to accomplish, and that an 87% chance of getting breast cancer could interfere in those plans. 

But for reasons I don't quite understand, I am hesitant about getting these implants. Do I need even need them? They won't be real, they will never even begin to look real. Why do I feel like I have to do this? 

I am certainly looking forward to shirts and dresses that fit correctly. I am looking forward to not seeing these lopsided, inverted blobs of skin laying on my chest. I am looking forward to having real cleavage again. 

Less than four months. Here we go.

Do you know your risk of Hereditary Breast and Ovarian Cancer? Visit facingourrisk.org to learn more.

We interrupt this break in blogging... for a blog post.

I took a break from blogging because for the next 12-18 months, there won't be a ton to update. But for those who wonder: I am healing. 

There's no physical pain. I have two disfigured lumps of skin that lay on my chest like deflated balloons. They are saggy and lopsided. Patten calls them my 'broken boobies' and sometimes asks when the doctor is going to fix them.

Honestly, I don't know when revisiting reconstruction will be realistic. With a new baby, there's just no good time for me to have a 2 lb lift limit. 

In the meantime, most days I wear a padded strapless bra, mainly because the majority of my work wardrobe requires at least some small boobies in order to lay well. Sometimes I just wear a sports bra with a sock shoved into one side, mainly just to achieve some balance. At home, I usually go braless.

For the most part, it all doesn't phase me too much. Sometimes I look at what is left of my breasts and feel unsexy and unattractive, and like I need to cover them up. But I know in my heart that anyone who ever sees me undressed is someone who loves me, unconditionally, and I need to not worry.

A bright side? (You know, aside from the whole not-getting-cancer bit...) I was shopping at Target recently and reveled in my ability to pick out a sundress with spaghetti straps. Before the mastectomy, I always wore heavy duty bras with wide shoulder straps. Spaghetti straps were never a part of my reality. I may have ugly, disfigured boobies, but I CAN WEAR SPAGHETTI STRAPS!

None of this though, is what inspired me to write today. Rather, it was something I noticed in the bathroom this afternoon.

I was finishing up my business and pulling up my pants when out of the corner of my eye, I saw the bathroom scale. 

I thought, "Where have you been?!!" But then I couldn't remember if the scale had actually ever left. 

I will admit that prior to six or so months ago, I had a very different relationship with that scale. It was a daily stop on my way to the shower. Not that the numbers fluctuated much, and not like I did much with the 'data' I collected each time I stepped on it, but it was routine; Every. Single. Day. Every day I looked down at the number and felt the pressure.

But I guess at some point, I stopped. I don't even know exactly when... maybe late last year? I don't know the last time I weighed myself. 

I wonder why the change? Part of me thinks it has to be tied to BRCA2 and the mastectomy. 

I took control of my body. I am in charge. Society can think what they want of me, but I will not be a slave to societal pressure on what a body 'should' look like. I am not 100% confident, but my priorities have certainly shifted. 

Amazing. Liberating. 

Pressing Pause

So the surgeon was right - just days after removing the tissue expanders and I feel human again. Now I just have some large incisions that are stinging and twitching and burning, but all of the aches and pains have gone away.  I even had those obnoxious mastectomy drains removed! My body feels so free without all of the tubes and extra 'equipment' hanging around. 

We've switched up the antibiotics a couple times to find what will best fend off infection I had developed with the expanders in.  As long as I follow through on treatment, I shouldn't have any more problems with that.  I also have ongoing iron infusions scheduled. I'm looking forward to an overall better health, and I know that it is on its way!

It's still challenging to look in the mirror and look at what's left of me. All I have is a little bit of loose skin, not even enough to fill an A cup. The incision scars are large and unsightly. It sometimes feels disheartening, but then I stop and remember the purpose. I won this battle! Cancer won't get me there! 

Reconstruction will wait. The surgeon says 6-9 months, but realistically I think life will push it to 12-18 months. With baby #3 arriving in the spring, I just don't see it being feasible to be down for too long. I had wanted to get my own stuff over with now, so I wouldn't have any problems snuggling the new baby. We didn't expect to have so many complications. Maybe next winter, or maybe even the summer after that. For now we can focus on getting the anemia under control so my body is strong enough for another series of procedures. I'm really not in a hurry, though. 

Thank you all again for the overwhelming support. We have truly appreciated the thoughts, prayers, messages, meals, childcare, and every other encouraging and supportive act. 

I need to take it easy for the rest of the week, but I fully anticipate being back at work next Monday. Pressing pause on this journey, and moving forward with life.

Flat, flat, flat.

Yesterday was a whirlwind, to say the least.

Kimberly texted an update to the surgeon early in the morning. She told her my fever was gone, and that I had a lot more energy because I'd had the iron infusion. She reported that I still had the stinging and burning on the right boob and also updated with the fact that I was now feeling some of those same symptoms on the left side, as well.

The surgeon didn't seem overly concerned and texted back to go ahead and let me eat. She said that even if I was going to have surgery, it wouldn't be until late in the day because she had a full schedule. 

I had a low key, lazy morning. I enjoyed coffee and a nice visit with a friend and then headed into my appointment. I really had convinced myself that things were getting better and I wasn't going to be having a second operation. The doctor asked how I was feeling, and I was honest... I was feeling less sick, I had more energy, but the pain was awful. The burning and stinging from the drain tubes plus the sensitivity of the infected area were just unbearable.

She said I should feel better by now. She said the infection didn't look too bad, but that didn't mean it wouldn't get worse. She gave me the option to wait it out, or to pull the expanders. She said if we pull the expanders now, I would feel better by Monday.

I have been so weak for too long. Healing has been so slow... too slow.  So we decided that it is time for me to feel better. It was nice that I'd had the option to try and begin immediate reconstruction, but my body clearly wasn't ready. I will spend the next 6-9 months healing from the mastectomy and getting the anemia under control. Then we will revisit reconstruction when my body is stronger.

Part of me feels like I quit and gave up. I wish I could have been strong enough. But I know that the most important thing is that now that the boobs are gone, the risk of breast cancer is nearly gone as well. 

She told me at 2PM that surgery to remove the tissue expanders would be at 7PM, so I went home, took a quick shower, and headed back to the hospital. Since I couldn't eat or drink, I hadn't taken any medication and was really hurting. The nurses were quick and generous with the meds to get me comfortable. 

The procedure was short and we were home by 9:30. After a couple pain pills, I slept well and woke up in less pain and discomfort than I've had in weeks. There is some stinging and burning at the incision site, but the Norco takes care of that pretty well. The old drains are gone, but new ones were placed. She said this set should only have to be in for a couple days. I see her again on Tuesday and am totally looking forward to be rid of these obnoxious little balls of grossness.

My MD has me set up with weekly iron infusions, and I'm taking some supplements to help my body hold on to the iron it gets. The weirdest thing is how FLAT my chest is now! It's almost concave! At least with the tissue expanders, it made it look like I had something there. Now it's just NOTHING. Time to round up some kind of falsies so my clothes will at least fit me right!

I've said it before, but I can't say enough how incredibly thankful for all of the love and support we've gotten throughout this crazy month. The meals, the prayers and well wishes, and the coffee visits... it all means the world to us.  

Here's to hoping that we're now really, truly on the way to recovery.

No!!!

And the bad news keeps rolling in. Yesterday, I developed a new pain. It felt like there was a knife digging into my right shoulder blade. The area around my right drainage tube was swollen and inflamed. The whole area was on fire and stinging and tender to the touch, all new sensations. I felt like I was getting a fever because I had the chills and my skin was aching all over.

Kimber popped into my surgeon's office to show her a picture of the swelling (perk of a spouse who works in a hospital) The doctor said I should be seen right away. Turns out, I have an infection developing. My body still doesn't have enough umph because of the anemia and can't heal itself from the surgery, and so it certainly doesn't have the ability to fight off an infection. 

image from: http://clairesholisticpursuits.com/wp-content/uploads/2014/01/Bandaid.jpg

I got some IV iron, fluid, and also started some antibiotics right away. And more pain pills, thank God. I am at home today but she wanted an update today so Kimberly exchanged some texts with her (another perk of a spouse who works in the hospital). I have to abstain from eating or drinking tomorrow, because if I still haven't improved, I will need to have another surgery tomorrow to remove the tissue expander so that the infection can heal and doesn't get any worse. It won't be as involved of a procedure as the initial mastectomy, but it does mean that the entire reconstruction process will be delayed by 6-9 months. 

All of this trouble... the excessive pain, the slow healing, now the infection - it's all likely because of the anemia. We knew it was a problem going in and tried to take the preventative measures, but the reality is that I probably wasn't ready for surgery. The overall blood numbers improved with the infusions in the weeks leading up to the initial operation, but my body just can't hold on to the iron. I guess I need to eat more beef.

image from: http://stepoutbuffalo.com/wp-content/uploads/2013/11/steak-pic.jpg

It wasn't supposed to happen this way. I pictured being down for a couple of weeks and then life getting pretty much back to normal with only the 'no heavy lifting' restriction in place. I didn't realize that three weeks post-op I would still be be stuck in bed and heavily medicated. I didn't realize my body would refuse to heal to the point of now getting infected. I certainly didn't predict that I would still be useless around the house and unable to help with the kids because they are crazy maniacs who jump all over me. 

It's so frustrating. Right now I am on antibiotics and have spent the majority of the day asleep. And now I'm feeling the same burning and stabbing/stinging on the other side, I hope that doesn't mean that the infection is on the other side, too. Praying that the drugs and the rest will be enough to keep me out of surgery tomorrow. 

On Healing.

I spent my day bored and lonely and annoyed that I didn't have any Starbucks, so those are all pretty certain signs that I must be feeling somewhat better in the big, physical picture.

Image from http://www.starbucksdrinks.com. 

The iron infusion helped for a few days, but the anemia is winning and my energy is already leaking away. I need to get with my regular MD and continue working on a long-term solution to this.

(Warning: a little bit of gross medical stuff ahead)

Still eagerly awaiting the removal of these nasty drains. Yesterday morning, I noticed some wetness/leakage at the painful point where one of the drainage tubes are stitched in place to insert my body. Kimber examined it and noticed a clot in the tube so she Googled 'mastectomy drain clots and leakage.' She was able to find out how to break it up and everything started flowing again. God bless the Internet. The whole area is tender and sore, but that is probably because of having to fuss around with it to work the clot out. Having a fluid build-up inside the area around the expander would be bad news, as the surgeon would have to pull it out until that cleared up, which would mean more surgery and put a major delay in overall healing and the reconstruction process. I will have these drains for at least another week. 

Sometimes I just stare in the mirror at what's left of me. The incisions are an ugly, wrinkly mess. The tissue expanders that were inserted at the time of surgery give the appearance that I still have some boob, but they are oddly shaped and are pretty much up inside my armpits. It's just all so wrinkled and dimpled and misshapen and unflattering. I know this is just phase one of a larger process and that in the end, things will have a much more natural appearance, but for now, it all just feels so ugly. 

I felt and expressed my first bits of remorse this morning. Not about having the surgery, but about the timing of it. Pregnant Kimberly is working so hard and she is so tired and having a ton of pain in her back. I hate feeling so dependent on her. She's having to deal with these wild toddlers and trying to keep up on laundry and now going to work again. I feel like such a burden. I know both she and my mom are totally exhausted from taking care of the kids and of me, and I am feeling so worthless to them. I am just not used to being in this position. 

Kimber told me that she knows if I had not done it now, we would have continued to find reason after reason to wait, likely until the kids are all in school, and that would have been be 5-6 years from now. With each passing year, it would have been so much more likely that cancer would be the one to win. I know she is right. If we hadn't have made this a priority, it would have been easy to keep putting it off. 

The lethargy from the anemia, these feelings of worthlessness at home, missing being able to hold my babies and their big, loving hugs, all compounded by my heart aching for the struggles of people I care about... It all has me feeling quite blue. 

So blessed. So loved. I know. I know. 

I just can't shake the sadness. 

Iron? Who knew?

It's amazing what a body can do when it has the fuel it needs. The iron infusion has made a huge difference in my energy. I still have a lot of pain, but I feel better than I have since surgery. 

I am in clothes that are NOT pajamas for the first time since I left the hospital ten days ago. We also left the house! It hurts to move, it hurts to breathe, it hurts to sit, it hurts to stand. The muscle relaxers have me totally wobbly and uncoordinated, but whatever, right? But it's time to move forward. Don't worry, I am not pushing it, using a wheelchair, and making my pregnant wife do all of the heavy lifting, lol.

Kimber took me to Supercuts to have my hair washed and rebraided, because full showers will continue to be a challenge as long as I still have these drains.

Oh these drains. 

They are painful and gross and always in the way. And while I know they are necessary, they are AWFUL. They likely won't be coming out for another 10 days or so :( 

---

My darling wife... After my hair was washed, she asked if I wanted to grab something to eat since we were already out. We looked at what was nearby and tossed around a couple ideas. Then she said, "Don't worry honey, I won't take you to Hooters."

Oh, she is so considerate that way. 

Bad News, and Good News?

I wish I could give some joyful positive update, but I am just not there at all. Here we are, eight days out of surgery and I am not doing any better. Truthfully, I am getting worse. I felt better three days ago than I do right now.  The pain is so awful. Sleep has been a struggle, and when I do manage to rest, Kimber says I whimper in pain. The pills help a bit, but really they just make me feel stupid and uncoordinated.

It hurts so bad.

So I left the house yesterday for the first time since surgery.  I had a post op appointment with the surgeon. When she walked in, she asked how I was. But before I could answer she said,  'I bet you feel like you got hit by a truck...'

Hit. The. Nail. On. The. Head.

She said some of my iron levels were so low they were immeasurable. The anemia was a known concern, which is why I had the series of infusions leading up to surgery. But apparently my body just doesn't have the reserves to focus on day to day 'getting by' along with the healing demands that have been put on it now,  which is why I still feel so awful.  

She gave me more meds, and the infusions start again today, along with some supplements that are supposed to make the iron bind/stick around for longer. Each infusion does make me feel better for a few days, but we do need to find a more long term solution besides sitting with an IV for two hours a week. 

Finding a positive? I know that today's infusion will give me 3-4 strong days. Maybe that will be enough to get me out of this recovery dip, and on the path to healing. At least I know there is a reason I am not getting better.

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We are all still very thankful for those who continue to offer to bring by meals. It's been so helpful. Please contact Kimberly if that's something you would like to do.  My mom caught the girls' cold from last week and is exhausted. Kimberly is 5 1/2 months pregnant AND catching the cold AND waiting on me... so she is beyond exhausted. We are just trying to get by, and trying to maintain some normalcy for the girls. 

This hasn't at all turned out as we'd expected. I know there are so many things about this that are out of my control, but I keep disappointing myself over and over again, in so many ways. I had thought I would feel better by now, I had thought I would have the energy to at least get some of the online holiday shopping done. Everything is running behind. We're doing Christmas so absolutely bare-bones this year, I will be shocked if we even get the Christmas cards out in time.

I know things will get better. I know that these painful inconveniences are still much better than the potential alternatives that could include chemo and radiation and all of the realities there that have life threatening consequences.

Trying to find positives among this mountain of challenges that life keeps tossing my way. Prayers for your own woes. I know so many others are also dealing with health, holiday, and family stress, I wish I could be a better friend right now. And also prayers for the challenges you choose keep inside your heart (because we all have a ton of those, too!) 

Purpose. Trying to define/refine goals and priorities and the best places to put energy. 

What really matters? Love. 

"It's enough, just to find love. It's the only thing to be sure of." ~ H. Day

I get by with a little help from my friends (aka, one day at a time)

I have been home for five days now, and they have all been a huge blur. Trying to keep a balance of pain meds and muscle relaxers and anti-nausea pills and stool softeners, because well... you know. 

I think sometimes iPhones should have a 'breathalyzer' type device attached to them, so we don't humiliate ourselves too much while under the influence of... anything. Apologies to Facebook friends for the excessive details. 

The pain has been awful, but it is definitely getting better. I think today has been the first day that I haven't woken up in complete agony. I guess that's progress? 

Thankful for friends bringing food by, because it takes some pressure off of Kimber while she's busy trying to keep me comfortable and the children entertained. Please don't stop! It really is the greatest way to help right now. 

Also thankful for friends like Sierra and Rebecca who have taken the girls away for a few hours to give us all a chance to rest. The little ones know that I have 'boo boos', but at 2 and 4, they really have no clue how to be calm and respect personal space. P keeps asking to see my 'boo boo things' (referring to my mastectomy drains.) She says, 'Ewwww! Grossssss!' And then asks to see them again. The nasty drains don't come out for at least another week. That will be a wonderful day. 

I haven't shown them what's under the bandages yet, because really, I don't even like to see it myself. 

Temporary. Just a step along the greater path. 

And done.

I am completely, and joyfully overwhelmed by the amount of love, support, and encouragement that has been sent our way. It feels so wonderful to be swimming in this ocean of positive energy.

Some people choose to keep their medical procedures private, and I completely respect that. I have been making a lot of noise about my own journey with a purpose: I want people to learn that we can be empowered when it comes to our risk of cancer. Genetic testing can provide invaluable knowledge that allows us to take charge and make life altering, and potentially life saving choices.

If there is a strong history of breast cancer or other cancers in your family, please talk to your doctor and consider genetic counseling.

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The procedure went well. The doctor removed all of the breast tissue, including my nipples. She tried to save as much skin as she could, because my poor skin doesn't have a lot of elasticity left from being so heavy for so much of my life. Saving the skin now will help with the reconstruction process.

The doctor said I woke up with a smile on my face, but my good mood faded as the anesthesia wore off. My first nurse in the recovery room was rather unpleasant and seriously lacked compassion. I was weeping because it hurt so bad, and she pretty much told me to be quiet. I was in a lot of pain, and frequently my body's natural response to pain is vomiting. My surgeon had told me that vomiting is like one of my greatest enemies right now, along with coughing and lifting. 

The grouchy nurse rounded up some anti-nausea meds, and that stopped the heaving. The pain is still awful though, like nothing I have ever known. I gave birth to Patten with no meds; not on purpose, but because that is just how it happened. I am HEAVILY MEDICATED with Norco and Dilaudid in the hospital right now, and the pain in my chest is still excruciating... worse than my drug-free labor with P!

My understanding is that the pain isn't from the incision, it's muscular pain. The tissue expanders that will make room for my implants down the road sometime were placed under the muscle, and it's the muscular pain that is ridiculous. They gave me a muscle relaxer down in the recovery room 12 hours ago, and that knocked me out. That was the last time I felt comfortable. It's 4AM and I haven't been able to sleep for more than 15 minutes at a time all night. 

I am scheduled to go home tomorrow (well, later today now, I suppose), and that kind of freaks me out. I do have a prescription for muscle relaxers there, so I am hoping that will make a difference. Know what else freaks me out? Both girls are sick. Coughing. Lol, great timing, right? Please pray that I don't catch their cooties. 

And know what ELSE freaks me out? I don't have any nipples. That's just... creepy. Does anyone remember the TV show Kyle XY? The main character didn't have a belly button and every time they showed his stomach, it seemed so unsettling. I HAVE NO NIPPLES!!! (I am sure that random fact is courtesy of the drugs, lol!) 

Thanks to everyone who has been so supportive. A few people have asked about stopping by. I have had visits from some of the people who are dearest to me, but really, I am not up for any more company at this point. If you want to help and are inclined, bringing by lunch or dinner in a couple days or early next week would be greatly appreciated. Coordinate that with Kimberly :)

Thank you all again, for being on this journey with me!