What's next?

For the past year and a half, so much of my breast cancer journey has been waiting for the next thing. First it was waiting for test results, then my mastectomy, then more test results, then my expander fills, then a skin-removing surgery, then more test results and questions (radiation?), then my implant surgery (followed by a surprise implant-removal surgery), then the next surgery to re-do my reconstruction and get another mastectomy, and now, it's down to ONE more saline fill and my FINAL (actual final) implant surgery.
When people ask me how I'm doing, I'm very honest. (and no, I never get sick of friends, family and co-workers asking how I'm feeling! It's one of the nicest, most genuine ways to let me know you are thinking of me and care about me). Sometimes I say I'm great, sometimes I say I'm in pain, sometimes I say some days are better than others. All of those things are true at one point or another. But how I'm feeling is mostly always followed by my "next thing." Because, honestly, that's how I'm feeling. I'm waiting for the next thing. That's on my mind, along with my pain, or whatever else I'm currently feeling.
"Oh, I have one more expander fill and then one more surgery."
I always say and always think, wow, now it's REALLY down to the wire. The home stretch. I'm almost done.
I'm always "almost done" it feels like.
Once I'm REALLY done, what comes next?
I say NOW what will come next is the breast cancer will be behind me and I'll be able to live my life. I'll have amazing silicone breasts that are safe, I'll have my body back, and I can move on knowing both of my breasts are gone and I'm cancer free and all my surgeries are over. That's what I imagine life will be like after.
After this ONE last saline fill.
After this ONE last surgery.
What is REALLY next?
I know, from my breast cancer journey and just life experience in general, life is seldom how we imagine. Sometimes it's better, sometimes it's worse. Do I really believe I'll be able to put the breast cancer behind me? Yes. Do I really believe my life will move on. Yes. (it already has). Do I really believe I'll feel safe from breast cancer, one month from now, one year from now, and for the rest of my life? Yes. As much as a two-time cancer survivor CAN. Yes.
Do I really believe I'll feel DONE? It depends.
What do you do when you're not waiting anymore?
What will it be like to live my life, and look to the future, without factoring in breast cancer? When I was planning my wedding and my honeymoon and everything in between and everything after, and now, when I look to tomorrow or next week, I see not the breast cancer, but the process. The process is still very much part of my life. I see one more fill. One more surgery. One more recovery period.
I'll have the expanders for this party. By the time this event rolls around I'll be one week post-surgery, or two weeks post-surgery. When I look into September, October and November, I see surgery recovery. When I look towards next week I see that last fill. I see the expanders. And while I think I'm doing a very good job of not letting them take over my life like last time, they are still there and they still hurt.
What will it be like to be invited to a wedding or a party and not be WAITING for the next step in the process? Not have to decide what dresses or shirts I can wear with a sports bra because I have the expanders and regular bras sucks. Not have to decide if I'll need an Ativan or a Vicodin for this or that. Not have to decide if doing this AND that is too much and too painful and if I'll need to rest in between. Not have to dread driving. Not have to pace myself for the work week. Pace myself for pain. Pace myself for WAITING.
What exactly will it be like to just LIVE, like I did before, without factoring in the process? Will I settle or will I still stir?

Grange Fair pics from yesterday!



My wonderful husband won me a prize! I chose the pink bear, obviously ;)



this little guy was cute :)



Red tongues from Rita's ice!





"Was that hard (to have both breasts removed)?"

I had my third saline fill this morning - 100 cc's on each side, bringing my total to 200 cc's bilaterally. I'll have one more fill of 50 cc on each next week, and then I'm done. So, because today was rather painful, I'm going to make this post quick.

Last week at the salon I was getting my hair trimmed, and my stylist and I somehow landed on the topic of breast cancer. I think we were talking about her sister getting breast implants, and somehow we got to me, and how I'll be getting implants for a completely different reason. The question she asked, which seems simple enough, after I explained to her my "whole" story in a nutshell, and how ultimately I decided to get another mastectomy was: "was that hard?" I said yes. But it got me thinking.
At my salon (somewhere I have been going to for years and feel very comfortable with the women (they know my name and give me hugs), I have shared some intimate details of my life, and had intimate details of others' lives shared with me. (Think of the Barber Shop mentality, except in a private room, and except we're not gossiping or talking about shopping.)

Two separate occasions with two separate women have ended with me talking about my breast cancer ... yes I'm so young, yes I found it myself, etc. etc. One of my aestheticians, also my age, has had thyroid cancer, and another has faced another traumatizing health event; the birth of her second child resulted in a total hysterectomy at the age of 27. So when I share about my breast cancer and these women share their tragedies, we are connecting on a whole new level. Before the sharing, she is just the woman waxing my eyebrows and I am just another customer. We see each other how we describe sometimes we feel others see us and judge us, whether completely in our heads or not, whether completely true or not: that we're young, vibrant, intelligent women who look put together and happy. But on the inside we suffer, or have suffered. And every day we work hard as hell to be the person others may judge us JUST to be: vibrant, young, happy. That they don't know just because we're young doesn't mean we haven't had our own tragedies, and just because we're young doesn't mean we have both breasts. We all feel that just because we're young we shouldn't be judged as naive. The world HAS touched us. But we're touching it back.

So after describing my whole "ordeal" about my breast cancer while planning my wedding, the second, third, fourth and fifth surgeries and my ultimate decision to undergo a left prophylactic mastectomy, my stylist asked me, in a very sensitive way: "was that hard?" - referring to losing both breasts by the age of 27. It's a simple question, and of course I normally just say yes, because it's obvious, it's HARD. But that particular question got me thinking. I'm not sure if anyone's really asked that question like THAT before. They just assume it's hard because why wouldn't it be? Everyone just assumes breast cancer, whether you're 26 or not, whether you're planning your wedding or not, is just HARD.

Yes, it was hard to be told I had breast cancer
It was hard to be told I had breast cancer WHILE I was planning my wedding
It was hard to be told I had breast cancer when I was 26
It was hard to have a mascteomy
It's hard to have surgery and deal with everything that comes with: recovery and pain just to name a few
It was hard to have lymph nodes removed under my armpit and re-learn how to open jars and car doors
It was hard to re-teach myself to lift weights, drive, carry a purse
It was hard to be in pain every second of every day
It was hard to have an expander under my chest wall, getting bigger each week, and pulling, pushing at my chest wall, muscles and skin, stretching me out
It was hard to have implant surgery
It was hard to be told I have Li Fraumeni Syndrome, and I should probably get the other breast removed
It was hard to live with the worry and anxiety of getting breast cancer again, getting a new breast cancer, or getting another primary cancer
It was hard when my right implant failed, causing my skin to open around it
It was hard to have that implant taken out two months before my wedding
It was hard to have only one breast at my wedding
It was hard to wear a prosthetic for six months, including during my honeymoon
It was hard to have another mastectomy, and then expanders AGAIN on both sides
It was hard to have the lat flap surgery: hard to see a large scar across my back, and hard to have numbness in my back.
It was hard to finally decide (after about a year and a half) to go on Zoloft, because if I can live my life with even a LITTLE less anxiety, I will be better off
It's hard now to get the expanders filled with saline every week, causing excruiating pain on the day, and days that follow after the fill, and then live with general discomfort the rest of the time
It will be hard to have another surgery where I'll get my implants. More recovery and more re-learning.

If you ask me about that part, yes, I'll tell you all of it was hard. But the decision to get the other breast removed? One of the easist I've ever made.

I know I can't speak for all breast cancer patients and survivors here, as all of our situations are different, and many women keep both their breasts following breast cancer. Having LFS puts me in a different category altogether. But from the moment I was told I had breast cancer in one breast, not only did I want that breast removed, I wanted the other one removed, too. Because when I was told this precious body part of mine was carrying a deadline tumor, it was no longer precious. It was foreign. It went from body part to object, and from precious to scary and urgent. And it went from mine to not mine.

So was it hard. Of course. Physically and emotionally. Hard is an understatement. Taxing, devestating. Yes, there are scars that are real and there are scars on my heart from having to remove both of my breasts by the age of 27. But in April 2011 they lost their meaning, their connection. I wanted my body to be safe. And they were a risk. That makes it hard. But it also makes it easy.

But the decision? Easy. Easy to remove something that's become foreign and scary. Hard that at one point they weren't foreign and scary; they were mine and precious. Hard that they changed roles. Scary that they changed forms. Something you once knew and loved, and related to your intimacy and sexuality and womanhood, something you would one day hope could feed a child -- turned. Turned into scary and urgent. Malicious. Yes, that's hard. That's very hard.

The decision? Easy. I've never looked back once and I don't believe I ever, ever, EVER will. I have chosen life and I have chosen to move forward. Scary and urgent are no longer a part of me. Instead I have safe, and safe is letting me get back to my life, the life I love so much.

This September

Good things often come in sets of three, or in this case, four or five, or six.
It’s hard to believe we’re almost to the fall, but September is only two weeks away. And this September is huge. For many reasons. In no particular order, next month will bring:

1.       My husband’s 30th birthday
2.       The expected due date of Seth and Katie’s baby, our nephew (and me becoming an aunt for the very first time!)
3.       15 years since I was diagnosed with Leukemia, making me a 15 year Leukemia survivor.
4.       My cousin Alison’s wedding
5.       My two year anniversary of joining Weight Watchers, which helped me lose 50 pounds and keep it off
6.       My final surgery where I will receive my permanent silicone implants. The surgery that marks the end of all surgeries, and the end of my breast cancer journey. (I would say “hopefully” my final surgery and “hopefully” the end of my breast cancer journey, because you can never be too sure what the future brings. However, instead I chose to say those things with certainty. Because as of now, those things are 100 percent true.)

Yes, it’s true! My final implant surgery, where my expanders will be taken out and my silicone implants put in, has been set for Sept. 19! My expansions have been going so great and I’ve been recovering so well that my plastic surgeon thinks I will only need one, maybe two, more fills, and then we can do the exchange! He said it’s a lot faster this time around, because I have the extra skin from the lat flap, and because my left mastectomy was prophylactic. Also, he has accepted another position out of state and will be leaving unfortunately at the end of October, so we want him to do the surgery before he leaves. After all, he is the BEST plastic surgeon, and he has done my last 5 surgeries. This way he can do my surgery, and see me post-op before he leaves.

ONE MONTH from now I’ll have my implants. ONE MONTH from now I can begin healing forever, and not just healing until the next surgery. I say this with certainty, because if I don’t believe, then who will? ONE MONTH from now I will be done with breast cancer. While it’s true I was “done” when they removed my cancer and found no remaining cancer, and while it’s true I am past the one-year survivor mark (April 2012 I became a one-year breast cancer survivor), my breast cancer JOURNEY wasn’t “done.” I still had another mastectomy to do, and reconstruction on both sides, and (what I thought would be months and months) of expanders. But the other mastectomy is done, and I just found out my expanders will be done in ONE MONTH.
Truly, truly, September is a month to celebrate.
Today, Aug. 16, marks one month since the last surgery. I’ve been back at work and back to my social life. For the most part I am not in a terrible amount of pain. Driving and sneezing, and stretching, hurt the most, but I assume they will throughout the remainder of this. I’m still relying on Ativan for muscle spasms, and the occasional Vicodin if it’s really bad. Both of those things combined make me a lot more comfortable. And this time around I am going to make sure I am comfortable. If I have to go through expanders a SECOND time, I am not going to suffer through it.

My plastic surgeon said it is perfectly acceptable to take a Vicodin now and then, especially after an expansion. So when I get home from work for the day and I’m not driving anywhere, I make sure to make myself comfortable. Take a pill, change out of my work clothes, and lay in bed playing Words with Friends. Then later in the evening, when Sean comes home, we hang out with Campbell. We watch TV and I go to bed early. That is how I find comfort. That is how I try to stay as pain-free as possible so I can do it all again the next day. I refuse to suffer. I refuse to take on too much. If a drive is too far away, I won’t force myself to do it. If social plans become too much, I’ll cancel. I know, as this is my second go-round with tissue expanders, that too much movement causes incredible pain. So I know I have to take it easy. While it’s important to still have nights out (two this week!), it’s also important for me to rest. Luckily, my job, my friends, and Sean all understand that. That living with expanders is extremely painful, pretty much all the time. And that the best way for me to survive and thrive through this next month is to make myself comfortable.

One more month? I can do this. Heck, I already am. And I’m doing it well, if I do say so myself.

(Pictures are from the past week or so)

My happy place

Lately I've been happy. Let's start with that one simple sentence. I've been really, really happy. Less stressed. Less anxious. More relieved. More relaxed. More HAPPY.

It could be a variety of things. It could be that it's finally sinking in that my most dreaded surgery is over and I am recovering just fine. It could be that I envisioned my life coming to a startling halt as soon as the two expanders were put under my chest wall, and realizing that it didn't. It could be that I envisioned weeks more of pain and discomfort following the surgery, and then realizing that I'm OK. It could be finally, finally sinking in that I don't have that left breast anymore.

I told Dr. Kelly that that feeling is the greatest gift of all. I feel like I could climb atop the tallest building in the world, lift my arms in the air, and shout, as loud as humanly possible: "I don't have any more breast tissue!" and it would not express how truly, truly happy and relieved I am. I'd shout it in the same way I would if I had just won the lottery. Or found out I was Queen of a foreign country. It may sound silly, but for someone who has faced cancer twice already, at the age of 27, and who was TOLD the other breast was a ticking time bomb, having both breasts removed, to me, IS THE GREATEST GIFT OF ALL.

Sure, they aren't ever able to get ALL the breast tissue out, especially with a skin/nipple-sparing mastectomy, but they do get most, and my risk goes down. Extremely down. Down so much I can shout happily atop the tallest building. So much so that the relief is overwhelming. HAPPY. safe. SAFE.

Remember I was scared to wash under my arms in the shower for fear I'd feel a lump? GONE. Showering in peace, without fear and anxiety, seems tiny, but it's such a great gift. THE GREATEST GIFT OF ALL.
So maybe that's why I'm happy. Because I'm finally realizing that although this surgery was tough, and I still have another one, that I TOOK CONTROL of my life and I feel relief because of it. Maybe it's because for so long I wanted that other breast gone, and now it is. Maybe it's because for so long I felt like I was carrying a time bomb in my body, and now I don't anymore.

Maybe it's because I am realizing I can be HAPPY, even with two expanders. Maybe it's because as much as these expanders hurt now (and as much as they are going to become incresingly painful over the next few months), that under them is NOTHING. No breast tissue. Less cancer risk.
Maybe it's because there's no rush and no pressure. Maybe it's because it doesn't matter when my expanders are done and when my next surgery is scheduled. Maybe it's because nothing is riding on this. Nothing is riding on what I'm going through now. No wedding or honeymoon planning, no breast cancer.
Maybe it's because I ALREADY feel like I have my life back.
Last year when I first had my expander on the right following my mastectomy, I always felt like I was recovering from surgery. Even weeks or months later. True, I did have FOUR surgeries last year within the period of 6-7 months, so technically, YES, I WAS always recovering from surgery. But I always felt "damaged." Like the expander was a temporary yet terrible thing. And yes, that still rings true. It's temporary. And terrible, in the fact that it's PAINFUL. (The worst is yet to come). But this time around, I don't feel like I'm "damaged," or still recovering despite the fact that I still AM recovering. One more week and I will have no more restrictions. So right now I'm still in the recovery period. And that's fine. But I already feel like I have my life back. I already feel like, even with the expanders, I am happily living. That although they are in my body and they are hard as rocks and they will continue to become more and more painful and more and more spasm-y with each fill, they are not all of me right now.

All of me is in my life. My husband, my family, my friends, my dog, my job, my plans. The expanders are just along for the ride.
Sure, it's easy for me to say that now. Ask me again how I feel about them when they've got 350 cc's of saline in them and I can't lift my arm or sneeze without my chest or armpit going into a spasm. Ask me again then. But now I'm going to try really hard to put these expanders in the back seat of my car and drive. They don't run my life. I do.
I run my life. And I love my life. And I'm happy with my life. I'm the happiest I've ever been in my life. Expanders and all.
I think it's funny, and I often ask myself, how I can feel so blessed and so extremely happy every single day, even WITH rocks under my chest, even after surviving two cancers and living with the possibility of more, even AFTER numerous surgeries and their recoveries and learning how to do everything all over again. And I'm not lying either just to please people or make them not feel bad for me. I would never lie in this blog. Pink and Pearls is, and has always been, about my true and deepest feelings. And honestly, I feel so happy and so blessed.
I may be a work in progress, but I'm learning. Learning to be happy, find balance, live my life and just BE. It's always been about just BEING.
I'm just really, really happy. Really at peace. No clouds or thorns or me as a tiny snail in a whirpool. I picture, now, instead, me driving my car with my expanders buckled up in the backseat. They are buckled in because they're not going anywhere for a while, and I can deal with that. They are in the backseat because I am in control of the vehicle. And I'm driving because I know exactly where I'm going.

Forget diamonds, sports bras are a girl's best friend

At no point, repeat NO point, during the expansion process, are regular bras comfortable. Ever. EVER. With tomorrow approaching the three-week-post-surgery mark, my plastic surgeon has told me I can wear regular bras, as long as they don't have underwire. So regular, soft, cotton bras. And trust me, I've tried. I tried last year during my first "battle" with my expander. And I tried again this time around. But I only make it through breakfast until I decide to change into a sports bra.
At 50 cc's of saline, or 350 cc's of saline, a regular bra is NEVER comfortable with expanders.
Sports bras are my best friend. I have them in all shapes and sizes from last year; as my expanders "grow," so do my sports bras. And this time around, essentially I have four incisions, including one on my back, which further makes wearing a regular bra close to unbearable. A sports bra, on the other hand, is soft and covers everything evenly. No lines scratching atop my incisions. I'm glad I learned from last year. I probably have about 30 different types of sports bras. And good thing, too. They're all I'm going to be wearing for the next few months.
Monday I had my first saline fill. Doc says everything looks great. He put 50 cc's on both sides, and next time can probably do 100 on each. Both expanders will eventually hold 350 cc's, at which point they'll be full, and we'll wait for my implant surgery.
As much as I hate the expanders, and as much as I KNOW they will become increasingly painful with each fill, I'm trying, TRYING, to just "enjoy" this moment and not "rush them out," if that makes sense. Sure, I'm super anxious to be done. Super anxious to have these "rocks" taken out of my body. Super anxious to get my silicone implants, and super anxious to get back to life -- to put this all behind me. I'm so close I can taste it. But I have to face the facts: I had my surgery, I have my expanders now, they are going to be filled, and there's nothing I can do about it. Ok, so maybe I can't "enjoy" them, but I can try to live in the moment, and instead of just waiting for the next surgery and the next big thing, kind of put the expanders in the back of my mind. I know from experience the next step always DOES happen, whether I'm waiting for it or not. My wedding DID happen. My honeymoon DID happen. This surgery - my biggest and most dreaded - DID happen, and I AM recovering. The expansions WILL eventually be over, I WILL eventually get my implants, and the breast cancer WILL eventually be behind me. It WILL happen, whether or not I'm waiting anxiously. So instead of waiting anxiously, I'll just live in the moment. The expanders will fill up whether or not I'm waiting for them to. So enjoy the process? Sure, as best I can, I guess.
There's no rush. I am so lucky this time around. My left mastectomy was prophylactic, and this expansion process, now, is strictly reconstructive - so I can have my body and my life back. No rush, no pressure.
It WILL happen. So I'll just let it. It WILL be painful. But at the end? Those six words.

Below is a picture of me and my friend Lauren at our friend Kim's bridal shower last Friday. I'm rocking a sports bra under my sundress. Totally acceptable, right? Still a cute outfit?

... Ok, fine, diamonds are ALSO my best friend. Especially mine :)

My beloved rocks!

Expanders and clouds

Tuesday I had my post-op appointment with my plastic surgeon, and he said everything looked great, and he is ready to start the expansion fills next week! He estimates (if all goes according to plan and there are no complications/issues with healing), I will need 4-5 fills (so 4-5 weeks of going to Hershey once a week). That is AMAZING! He said we can move a little faster this time around because I have extra skin on the right from the lat flap surgery, and my left has already been stretched a little because I had an implant in there.
My doctor also believes he can have everything done (including the exchange surgery when I get my expanders taken out and my silicone implants put in) - by the end of NOVEMBER! Incredible.
I so much dreaded, and for good reason, doing the expansion process all over again, but if it has to be done again, at least it can be done this way: quickly. That's not to say it won't be extremely painful. But this time around I'm not dealing with what I was last time, which was planning my wedding, the questions surrounding my breast cancer and surgery and treatment options, and my Li Fraumeni Syndrome diagnosis. Now, the wedding has happened and it was amazing. The honeymoon has happened and it was amazing. Of course more amazing things are coming up (weddings, bridal showers, birthdays, babies being born), but there's less pressure. I'm not planning my OWN wedding or having my OWN baby. (at least that's not the plan yet!). We can focus on getting these expansions done. Focus on finally finishing my reconstruction. Finally putting the breast cancer behind me.
And sure, it won't be pleasant. If you read my blog last year about how painful and debilitating the expander was (just ONE that first time), you'll know I'm in for a rough ride. Pain and agony. Every day, and with every move. I've been through it. But this time around, like I said, there's less pressure and less stress. Less time constraint. Less pressure to be done by a certain time so I can walk down the aisle. So maybe with less pressure and less stress I'll be more relaxed, and my mind will be more at ease, and maybe, just MAYBE, that will help me get through these 4-5 weeks a little easier.
And I don't have the 45 minute commute anymore. I am currently working part-time only five minutes away. As I'm recovering, and as the expansions go forward, that will take SO much stress and pressure off of me. Work is close and flexible.
So there are many factors this time around that can help this expansion go smoothly, and I'm counting on those. The biggest though, is that I don't have breast cancer anymore. The biggest is I now feel safe, less anxious, about breast cancer. The biggest is knowing that in a few short months I'll have my body back - my permanent implants. And life will move on. Regular bras and all.

So yes, the end of this summer and this coming fall will be hard. It will be painful. But like last time, I'll get through it the best way I know how. I may have to limit my activities because of pain, so I will. But I'll still make time for fun and girls' nights and coffee dates and shopping, because fun keeps me going. I'll find balance - something I had a lot of trouble doing last time around, last year.
But life is different now. Without even trying too hard, I already AM finding balance, and I already DO feel balanced. I am in a happy place. I am the happiest I've ever been. Happily married with an amazing husband and an amazing (bitey, jumpy) dog and an amazing job and amazing friends and family and amazing plans and amazing spirit and strength. Yes, I said it. Amazing spirit and strength. Mind over matter.

The surgery I so much dreaded is already over, and I'm well on my way to full recovery. Two more weeks and I'll be able to exercise again. And today I started work again - at exactly two weeks since the surgery. I'll start small for a while - 4-hour days, and then see how I feel once the expanders start.
Mind over matter, and spirit and strength. I'll use those tools. I have them, so I'll use them. And I'll get through these expansions, and live my life while doing it. Because I've got love surrounding me on all sides. And that love pushes me up every day. The love of Sean and Campbell and my family and friends. Everyone who cares about me pushes me up. Sometimes it feels like they push me up onto clouds. And sitting atop a cloud, how uncomfortable can expanders really be?!

I got through my biggest and toughest surgery. I'll get through these expanders. I'm so close to the end. That's enough drive for me. That's everything.

(Photos above: a few snapshots from my iPhone over the past few days)