4 days post surgery!

Hi everyone! Well, I guess it's time to get back to the "real world" (or at least the Internet one)! My surgery went very well (thank G-d!) and now am day 4 into recovery. Each day is slightly better than the last, but today is really the first day I have felt well enough to blog, check my email, etc. I also had my post-op appointment so we went to Hershey this morning, and everything checked out well! I will meet with my plastic surgeon a week from today, at which time he'll hopefully "clear" me for driving, going back to work, and yes, lifting my arms above my head, which I'm still not allowed to do. Patience, Marjorie, patience.
The pain is very manageable now. And it's nothing compared to the pain of the expander! I am on Tylonal now, when needed. After like the first two or so days following surgery I've learned I need to switch from Percocet to Tylonal because Percocet makes me VERY sick. The effects of the Percocet, literally, are worse than the effects of the actual surgery. I just get very nauseated and dizzy...not fun. I've also had a constant headache these past few days (probably from the Percocet and anesthesia) that started as a pounding migraine that was not EVER relieved by Advil, and turned into a tolerable headache. Now, today, it's almost gone.
And the implants! They are wonderful. It will take about a month for them to "settle in" meaning they have to drop slightly to where natural breasts would fall, so for now they are up pretty high, but I guess it's not enough to notice. And I'm not sure what bra size I am. I'm obviously bigger than I was before, but everything looks very real and natural on me - the doctor gave me implants that fit my body so well you wouldn't know they are implants...and that's the whole point, really. I want to look like nothing ever happened. And I think he definitely accomplished that. And I'm very happy with the outcome!
Ok, so I think I'm done writing because my arm is starting to hurt. All in all, though, I'm in good spirits, and feel very happy and relieved with everything. It can only get better from here.
Thanks to everyone for all the well wishes, prayers and support these past few days (and past few months!). You guys help the healing process tremendously.
Until next time...

and.. Happy Halloween!

Love,
Marjie

Tomorrow's the big day!

Here I am in Hershey! Today's doctor's appointment went well (ultrasound and all!) and my surgery is a GO for tomorrow! Tomorrow the expander comes out and I'll get my permanent silicone implants. I also was able to bring up my thoughts on having a prophylactic mastectomy with my breast surgeon, which was a huge relief. I made her aware of my thoughts, got her opinion and input on it, and basically, brought to her attention what I had been considering, which was my ultimate goal.
Tomorrow's surgery marks the end of this breast cancer journey, of this era, of this time in my life. Sure, I've got the recovery the few weeks that follow, but it's only good things that come after that.
Now I'm ON the fence. Before, I had approached it. Now, I'm on it and climbing over it. This time tomorrow, the fence will be gone and I'll be looking at the greener pastures that lie ahead.
Thinking back at everything I've been through, from April up until now, feels bizarre. It was six months that felt like 6 million years. Tomorrow, though, it really ends. I don't expect to feel relief right away; I'll be in pain and will have to get used to my new body, and of course there's still months and years of screening and anxiety, and possibly another mastectomy. But I can't focus on that. I've got to focus on what's ahead tomorrow. What's here and now: that my expander will come out, after nearly six months, and because I'll have implants, I'll slowly start to feel back to normal. And that's most important right now.
So now my focus is on tomorrow. The good surgery. The happy surgery. The reconstructive surgery. To fix me right up and help me move on. Tomorrow will bring many, many new thoughts, feelings and emotions. And I can't say now what they will be. But I'm hoping two of them are hope and relief. I feel them already. It's so hard to see the end, even with it really right in front of me, even with me ON the fence. But I know that will take time, and I accept that. I accept the challenges ahead of me. But I also know tomorrow will bring great things.
So, goodnight. This is my last post with my expander. My last post before my surgery. I'm ready. I feel like I've been waiting for tomorrow my whole life.

Sweet support

As my surgery approaches, both today and yesterday have been filled with sweet cushions of support. Today, my co-workers surprised me at work by wearing pink and pearls, and having a cake, in honor of both my blog and my upcoming surgery! Last night I had a Champagne and Cupcakes party with my girlfriends. We decorated the cupcakes for both Halloween, and for breast cancer awareness, also in honor of my upcoming surgery. (Notice the "boobies" and pink ribbon cupcakes!)
I have been surrounded by love, encouragement, understanding and support from my family, friends and co-workers since the beginning of my breast cancer journey, and have been so lucky and blessed to have such a wonderful support system behind my back every single step of the way. And it's been amazing to have them celebrate with me in the days leading up to my final surgery, to remind me that I'm doing great, I've been strong, and this is almost over.
It took a lot for me to not cry today as I walked into the break room at work and saw all of my co-workers clapping for me and wearing pink and pearls. I had come into work earlier that morning in a pretty rotten mood (like I've been the past few days), but seeing everyone there supporting me and rooting for me ... there are no words, really. These are people I see every day at work. I see them in my good moods and bad, and through it all they've remained consistent and loyal to me: always asking how I'm doing and feeling, and telling me, in so many ways, that they're thinking of me and praying for me. They've been kind and patient and understanding. I've been able to be open and honest with them, which is important to me. But to see them all there, at once, in pink, was overwhelmingly amazing. I was reminded, yet again, how amazing the people in my life are. It's funny, really, how every reminder gives me more strength.
And last night, with some of my best girlfriends, as we toasted with pink champagne to my "new boobs" and decorated cupcakes, I realized, yet again, how lucky I am to not only have such supportive and understanding friends, but to have friends who really get me. Who understand I need to make cupcakes that look like boobs, and drink champagne, and take silly pictures.


I could say (and have) again and again how lucky I am to have such a wonderful, amazing, phenomenal support system. I could say it 17 million times. I could shout it from the rooftops. But it would never, ever be enough. It would never even begin to scrape the surface of the love I feel every single day from the people in my life. My friends in State College. My family in Virginia. My family in New York. My family in Washington, D.C. My friends and family (Drewbie) in West Virginia. My friends overseas, in England and Israel. My childhood friends, whom I've known since preschool and kindergarten, who have reached out to me. My friends from high school, whom I haven't spoken to in years. My friends and co-counselors from camp. And my fiance, Sean. Who listens to me cry and complain and worry. Who talks sense into me, and snaps me back into reality. Who makes me soup. Who gives me back massages. Who is there for me, every single second of every single day. Who is my rock, my best friend, my support, my love, my inspiration, my encouragement. My everything. Sean: without you I could not do this. You hold my hand. Reassure me. Drive me to doctor's appointments. Ask questions at the doctor's appointments. Sit next to me, keep me calm. You never miss a beat. You're always there, and always where you're supposed to be, when you're supposed to be. You take the reins when you need to. You take control of the situation when I can't - physically and mentally. There is no way I could list all the ways in which you're there for me, and in which you are my perfect partner, my soulmate, my life. You are my "meant to be." Because I have you, I can get through anything. And I want to get through anything. You are my everything.
Every single person in my life has been beyond amazing, in a variety of ways. And if I tried to count the ways in which I have been supported, I wouldn't know where to start. I would lose track. If each way was one M&M, there would be warehouses full of them, up to the roof, spilling over into the street. You would drown in them. (A happy, chocolate-induced drowning, of course.)
So here's a pink champagne toast to my beautiful friends and family, beautiful cake and cupcakes these past two days, and pink and pearls.
Because of the strength the many people in my life have given me, I am able to raise my metaphorical glass, lined with pink and pearls, and toast my support system, who, every day, in my eyes, are wearing pink and pearls for me; toast my upcoming marriage to the most amazing man in the world; and toast my future: a life of happiness and health and family, where breast cancer will one day be a thing of the past.
L'Chaim! {to life!}

I've approached the fence

Three days until my expander comes out! THREE! If I wasn't in the home stretch before, I am now. And I'm way overdue to get this thing out of me. I've BEEN way overdue.
Despite an amazing weekend with my mom and one of my best friends (we went shopping, to the beauty salon, to my bridal salon, the pumpkin patch, and ate at some of my favorite restaurants!), I am still so anxious about Wednesday. My anxiety is far less than it was last week when I first made the appointment on Wednesday to get "checked out" again, one final time before the surgery. That's because I've been actively attempting to see, focus on, have hope and believe everything will go OK Wednesday, and my surgery will go as scheduled on Thursday. I am finding faith (though it takes a lot of work every day) in all of this. That I'll have the surgery and that because of the surgery I'll be able to move on with my life.
The final fence I talked about in a recent post is very clear in front of me. It's thick, tall and painted white. Half of it will come down after Wednesday, the other half after my surgery. And then the healing begins: physically, mentally, emotionally.
Really, the only thing that's making today and tomorrow somewhat bearable is knowing this waiting is temporary. That it will be over in a few days. That I have two full days of work left, and then we head to Hershey on Wednesday, and I'll have my ultrasound. And then Thursday is the surgery. It's here and it's happening and I nave to literally force myself to see it and believe it.
I have so much trouble allowing myself to see the end of all this, but I have to try. I have to get there mentally as well as physically. And this really is the end for now. The big ending. Of this breast cancer. Sure, there will be years that follow of tests and screenings and anxiety, and maybe a preventive mastectomy. But THIS thing, this is the ending. The big ending. This surgery is the final step in my breast cancer journey. And I'm so excited about it. Excited to move on, feel better and slowly get back to normal. I want to envision it but it's hard. That's me trying to protect myself. To not get too excited, or to not look too much forward to the things I want. Well, I have to. I want this surgery so badly so I have to really allow myself to see it happening. Just like the wedding.
I have to believe everything will be OK, and everything from now up until the wedding (and beyond) will go as planned and will be just what I've always hoped and dreamed of. But breast cancer got in the way. But it also got out of the way ... just in time. Now the real question is: can I believe that?
Saturday I tried on my dress and picked out, and ordered my veil and shoes. Obviously, I will not be sharing any details. But I will say, as soon as I put on my dress again (it had been since July) I didn't want to take it off. I literally did the turn-and-swish-around movement, moving my hips from side to side, while looking in the mirror, like a Disney princess does. I have a natural glow as soon as I see my dress, even on the rack. And when it's on, I am transformed into the bride I was always meant to be. And now, my shoes and veil are ordered! We're only a week or so away from the five-month mark. Things, they are a'happenin'!
When I had my dress on this past weekend it was easier to see the wedding actually happening, and I felt closer to it. There's still that big roadblock, though. The big white fence. The final surgery. (And the final "check" of the other breast before the surgery). Really, truly, the only thing that makes these next few days bearable is knowing all of this will be happening within the next few days. I won't have to wait forever for things to happen again. I'm trying so hard to picture myself, on the day of the surgery, in my gown and ready to go. So excited to get the expander out and my implants in. To know, when I wake up hours later, I can begin the recovery process. I'll be able to move freely. Exercise without pain. Sneeze and cough without muscle spasms. Put on a coat without being careful. Opening car doors, and putting on purses, without worry or pain. And have a normal-looking chest again. Not worry about what bras to wear with what shirts, or how my scarves cover up certain parts of me. Feel, and look normal. Heal, from all of this. And it's only a few days away. Time goes so slowly, both when you're waiting to hear how your life will change (waiting for test and surgery results) and also waiting for it to start to go back to normal. Time goes so slowly when you're waiting for the final fence to come down. And when you're waiting to see how you'll be after the final fence comes down.
As much as I try every day to live in the moment and live as normally as I can while I'm waiting, there's no doubt that I'm always waiting. When you're always in pain you're always waiting for the moment when you won't be.
I think the hardest part is waiting for the moment that you'll no longer be waiting.

Back to basics

To regroup and "re-light" from yesterday, I have decided to resort back to my basics ... my mantras for living life the best way I can. First, before we get into that, I'll explore some thoughts and conclusions I've come to since yesterday, through talking to my wonderful friends, fiance and mother:
1. There is nothing bad about getting an ultrasound the day before surgery. After all, it's what I wanted. I was anxious anyway, and wanted to get checked out anyway before April. So, essentially, this is what I wanted. Additionally, it will give me an opportunity to talk to my doctor about a preventive mastectomy BEFORE April as well.
2. Sure, the short-term of all this is anxiety. I will probably be anxious from now up until next Wednesday. But the anxiety is short-term. One week, followed by maybe 20 minutes during the actual ultrasound. But the long-term is relief, for the most part. Anxious today, relieved tomorrow. If (or once) everything comes back fine from the ultrasound, I can rest easy for the surgery, and for the months that follow, knowing I got everything checked out. So I have to look at it as: scared today, relieved tomorrow. Scared this week. Relieved for the next 6 months.
Those are the two main points I am examining as the reality here. I wanted this anyway. There is nothing bad about it. I would be more anxious if I would have waited a few months longer. I was anxious anyway. And whether or not my pains went away I would have STILL wanted to get it checked out. This just allows that to happen before the surgery. So the surgery can be done with peace of mind.
Obviously, I always, always try to envision the worst case scenario. And after having cancer twice, who can blame me? Going into a doctor's office provokes so much anxiety. I described it to my friend Adam last night: If every time you walked into a Walmart you fell on your face, would you want to go to Walmart again? Two cancers, and the endless testing that goes along with them, is enough for me to imagine falling on my face every time, whether or not it's always bad news. But it seems the bad news clouds your judgement. It doesn't mean EVERY doctor's appointment I've ever had was bad or even that bad news came from it. Quite the opposite, actually. It just means I associate doctor's offices with bad news.
Every time I walk into a doctor's office I imagine another bomb dropping. And the funny thing is, no matter how hard you try, you can never really EVER prepare yourself for the worst. But that's what I've turned into, and it's something I mentioned in my latest post. I don't allow any room for relief or hope in my head. When ever I do feel a tiny bit of relief or hope I cloud it, or cancel it out, to try to prepare myself for something bad so I won't get my hopes up, or be surprised. But that never works, does it? Why can't I allow myself to have some peace and hope in my head? After all, it's the better way to be.
So, back to the basics. What I've learned, and what I've taught myself through dealing with life, especially two cancers and all the anxiety that comes with it. These themes have been mentioned before in my blog, and are weaved throughout. That's because they're real and meaningful. And sometimes I just have to remind myself of what I believe in. These are things I've always taught myself and told myself, and try to remind myself of. These are themes I try every day to live by. Here they are:
1. You can't control certain things in life from happening to you. You can only control your reaction, and how you live. I can't make or not make breast cancer happen to me. But I can live a healthy, happy life with a positive attitude. In other words: I have to focus on the things I CAN control, and that's my outlook and perspective. That is being in love and being surrounded by my fiance, friends and family. Being surrounded by people and things I love. Eating healthy and exercising. Taking care of my body. ALLOWING myself to enjoy things and be happy, despite the anxiety I have. ALLOWING myself to get excited about the wedding.
2. There's no point to living in fear. That is no way to live, and frankly, is a waste of time. (Back to No. 1: why worry about things you can't control?) Living in constant fear and anxiety, and not allowing yourself any bit of relief or hope is damaging to your quality of life, well-being and mental and emotional health. Why live that way? I don't want to live that way. It's tiring and annoying. I want to live with hope and happiness. I have to have HOPE that everything will turn out OK. Because it always, always does in the end. Life, if lived fully, will always work out in the end. It will always come full circle. But you have to ALLOW it to.
By reminding myself that I can't control certain things, but to focus on what I CAN control, and that I don't want to waste my life by living in fear and anxiety, I can kind of get a grip, again, on what all of this is about. Lately I had been having trouble ALLOWING myself the teensy bit of relief and I hope I had before. I have been having trouble allowing myself to get excited about clothes, making coffee in the morning, and upcoming plans. Whatever excitement I did have about those things, that came naturally, I quickly cancelled out by filling my mind with thoughts of anxiety and fear, probably in an attempt to "prepare" myself. So now I've got to get back to the basics and once again allow myself to feel the things I naturally feel, and that's happiness and hope deep down inside. That's my light. That's my glittered shoes and the pumpkin patch and watching "Fashion Hunters" and getting the urge to buy clothes. That's putting together a great oufit in the morning, emailing friends for no real reason, and getting excited, every day, about the wedding. Where did I lose all those things? Now I realize there's no reason to not let myself have those things, because if anything, they will help me, not hurt me. Life is way too short to live in fear. Easier said than done, I know. But I have to try.
Try, try, try. That has been a common theme lately. I'm always trying to live, trying to find balance, trying to be OK, trying to focus on one thing or another. But today, I'll give the word "try" a different meaning: I'm going to attempt to do the things and feel the things that already come naturally to me. That doesn't sound too hard, does it? I'm going to allow myself to feel what I feel naturally, and not let it get clouded by these thoughts I create to protect myself from bad news. Because not only can I not really truly protect myself, imagining bad things before they happen doesn't exactly "prepare" me for anything; in fact, it only makes my quality of life worse.
So today it's back to basics. Back to the things I taught myself years ago. And back to, actually, believing them.

Thorns today

Well, I wasn't at all exaggerating when I said each day is literally a struggle. I had decided, just yesterday, I would call my breast surgeon in Hershey and make an appointment for an ultrasound AFTER my surgery. It was all planned out in my mind. So I called this morning, before my therapist appointment, and said I'd like to come in after my surgery, but before April, for an ultrasound. I had orginally called a week or so ago because I was worried about sharp, sporadic pains I was experiencing in my left breast. I talked myself into chalking it up to being a combination of mental anxiety, caffeine and stress. When I called they said to watch it, and to call again if I wanted to come in to get it checked out, but pain rarely is a symptom of "anything bad." She also said I could have pain from where the titanium marker is where I got a biopsy back in April. Scar tissue can form around it, creating some discomfort. So, at that time, I kind of let it go, and the pain faded a little bit. But I called this morning because I didn't want to just "forget" about it and let it consume me until April. Because I know myself, and pain or no pain, I would want to get it checked out, DESPITE the fact that I just had an ultrasound on that breast in September. Anyway, point aside. So they said to come in, but would rather I do so BEFORE the surgery. They want to make sure everything looks good since that left breast (the one with the pain - the one I didn't have breast cancer in) will be getting a silicone implant along with the right breast. And it makes sense. Anytime they are doing surgery on something and I have a complain or concern about it, it should get checked out BEFORE the surgery. Yes, It makes sense. And in the long run, I'll probably be happy with this decision. But I'm going THE DAY BEFORE the surgery. The day before. So, automatically, my mind races to worst case scenario (or just bad case scenario) and that's they WILL find something they need to biopsy, and if they do, the surgery will be cancelled. No implants. Expander stays in. Biopsy. On the other hand, as the nurse described, if everything looks normal and they just see regular fibrocystic changes, they will go ahead with the surgery. UGH.
Half of me thinks I "created" this anxiety-provoking scenario. I am the one who called to get an ultrasound. They didn't want to see me until April. Yet I called and wanted to go in. But on the other hand, I didn't do this for nothing. I was concerned about pains and I didn't want to "let that go" until April, mostly for my mental well-being. The doctors took my concerns seriously and scheduled me in. The good part is that if all looks OK, I'll get yet another "clean bill" right before my surgery. I'll get the go-ahead, like I already did in September. I'll feel confident knowing the surgery was done after everything was checked out. But on the other hand, IF (G-d forbid!!!!) they see something they want to biopsy, I will begin this hell all over again. Not only will I be devestated that my surgery will be cancelled (it was so WELL-scheduled into my life right now), but there will be even worse things on my plate. Things I don't even want to think about.
The realistic me, hidden somewhere deep down, thinks everything SHOULD be OK next week and the surgery will go on as scheduled. But the anxious me, where I am the exception to every health rule, and nothing is what it seems, and we can never, EVER be too certain, is trying to prepare myself for the worse. Or the worse that could come out of that day next Wednesday.
My therapist described me, quite perfectly, as in I have created no room in my head for relief. I'm always, try as I might, trying to achieve a place of control, peace and certainty over my life where I can just LIVE without anxiety. But I always, always, always cancel that out with some new and, some of the same, worries. I don't allow any space of peace, of calm. And I probably won't for a while. And that's just the way it is now.
Yes, every day is a struggle. Not just a struggle to live or to survive or to keep going, but a struggle to find just one place in my mind to be. It doesn't even matter WHAT that place is. I just need to find one. One single place to be. It's near impossible.
So I'm not sure how I'll BE this next week, as I wait for my ultrasound on Wednesday, and hopefully my surgery on Thursday. As much as I want all of this to be over, it's really, really not. Once again, the end of the tunnel feels clouded, and today, for the first time in a while, I see more thorns on my path than roses.
Sorry to be depressing, but there's no purpose in me having this blog if I'm not telling the truth about how I feel every single day.

All about the glitter

Usually I don't write a blog post unless I have prepared many thoughts and feelings, and have many things to say. Well, today really isn't that different from most days, I guess. I just don't have a thought-out commentary about my ... thoughts. UGH. Instead, I'm going to be a little sloppy and just write what I feel, which is hard for a professional writer. We like to be prepared, organized. Today that is just not going to happen. I feel both good and bad today. Good = a plan is in place for me to make an appointment with my breast surgeon BEFORE our scheduled time in April for her to check me out (ultrasound maybe?) and so I can discuss with her my wishes/questions/concerns about having a preventive masctectomy on the other side. I'm not saying we have to schedule the procedure, but just talking to her about it - I feel - will help ease my mind. I want her to know my plans so they don't seem so foreign. So that's what I feel good about. I still am very nervous, anxious, scared about getting another breast cancer, but those fears are a LITTLE less now that I am taking action and doing something about my health. Being proactive. Instead of just sitting here, in what I describe as a curled-up position, in fear, all to and through my wedding planning. Not what I want. So I'll see my doctor. Ease my mind a little. And if that STILL doesn't ease my mind, even a little, then I'll just work harder. Because as much as I wish all of this would just go away, it can't and it wont. I've got to somehow work and manage this anxiety into my life. I have to, unfortunately, let it be here and do what it does, but work with it ... knead it like bread, almost, into something else: something less harmful to me physically and emotionally. And I believe I'll get there. To a place where this doesn't run my life. It just, quite obviously, won't happen anytime soon. But I'm willing to work on it, as much as it sucks every single day to work on it. But what choice do I have? It can't be completely ignored. This - all of this - is a part of my life now, at the most terrible time. But I can't fight that because you can't fight reality. You work WITH it, even if it's the most tedious, most heart-wrenching, most painful mental thing you do. Fear. A small, four-letter word. Yet it takes up so much of my time. But I have to remind myself that this isn't forever. This fear will go away somehow, some way, whether it's a preventive mastectomy or something else. Or both the preventive mastectomy AND the something else. I won't always live like this. It just sucks I have to live like this now. But once again, what choice do I have?
In this post I'm also celebrating! 10 days until the expander comes out! If I wasn't in the home stretch before, I am now. And then I REALLY will be two days from now. I'm experiencing severe burnout. It's so severe that I thought it was severe two months ago. But apparently, back then it wasn't severe enough. NOW it's really severe. Expander burnout. In all of the possible ways you can think of. Should I name a few? Sleeping, sneezing, moving, driving, living and not really living. Expander burnout. Go away, expander.
And, although this isn't a celebration per se, I am including a picture of my new glitter high heels. They aren't new, as I got them probably almost a month ago. They were 50 percent off at J.C. Penney and it was one of THOSE days when I bought them. I don't usually give in to my retail therapy desires, but I did that day. It's better than food or wine therapy. Or, some could argue.
Ok, so here they are, and they make me happy. Now ... what to wear them to? New Years, my birthday... really, when you own a good pair of shoes the possibilities are endless.
So, because, being the writer that I am, I need to somehow tie all of this together even though at the beginning I said I wouldn't. That I would be sloppy and just write. I guess that's not entirely possible.
I'm apparently a very structured person, even when I'm trying to be sloppy. But it's my blog so both sloppiness and structure, and glitter, are allowed.
We've got fear and we've got glittered shoes. Yup -- sounds like my life.
No matter how yucky things are, glitter can always cheer me up. And my life. My wonderful fiance, friends and family. My girlfriends and I are in the process of planning a Champagne and Cupcakes party. How fun are we?! And my mom and one of my best friends, Rachel, will be coming to visit me this weekend! I'm planning a fun two days of Thai food, a visit to my bridal shop to try on my dress with shoes and a veil, getting "done up" at my favorite salon, and pumpkin picking and apple cider drinking. My life -my friends, my family, my future husband- all cheer me up every single day. And I always need it, believe it or not. Glitter shoes ... now they just fit perfectly into the picture. That's their job: to spice up the plans I make with the people I love. They go on my feet when I have someplace to go. With my life, you can never show up barefoot.

My friend Amy's blog!

Hi everyone,

Wow, doing two posts in one day...crazy! I wanted to make a special post today to direct you to my friend Amy's blog. Amy is a childhood friend of mine whom I've known since we were in kindergarten together. We've lost touch over the years, but she recently contacted me and told me about her blog, and that she featured me, my blog, and my breast cancer story in a recent post. Reading the post made me cry, and it made me realize how very well Amy still knows me, despite the years that have passed between us seeing each other.

It's friendships like these where time and distance don't matter at all. I know, even though we haven't spoken in a while, that she still very much loves and cares about me. And I her. It makes me realize how incredibly lucky I am to have such amazing people in my life. It also makes me realize that even if I have lost touch with some of these people, I can still count on them to be part of my support system, no matter what.

I want to thank Amy for her post about me, and for reaching out to me during this very difficult time. To Amy: I want you to know how much I care about you and value you. I know we haven't been in touch over the years, but I've learned, through you, and some of my other friends, that there is no limit to certain friendships and relationships. Sometimes the most special ones are the ones that are still there, years and years later. Thank you!

http://amyjk.tumblr.com/post/11273385815/i-had-a-friend-when-i-was-younger-named-marjorie

I have also included Amy's blog as part of my blog list, so please make sure you check it for updates!

Love,

Marjie

Fences

Last night was full of friends and good food as we went out to dinner at Luna 2 and all shared a delicious veggie pizza, and then Sean and I went to Meyer's Dairy (something we do only as a treat!) for some ice cream and milkshakes =)
I have been thinking a lot these past few days about what is to come - in now less than two weeks! (My surgery).
Although the surgery is something I've been looking forward to for a while now, I do see it as a roadblock, or really, more of a fence. The first and second surgeries were also fences, and once they were over and results were in, and I was recovered, the fences came down, and I could more easily see the "hills" and land ahead, meaning, mostly my life after breast cancer, and the wedding.
The wedding becomes more clearer and closer every day, but there's still the fence of my final surgery, and I know once that fence is down we'll be into November, and that's only four months until the wedding! Once the expander is out I think I'll feel A LOT more comfortable, and more like myself, and can therefore start moving on with my life. I'll be able to sleep and move like I did before all this, without pain, and also, I'll have a new look! I'll be more confident that my chest isn't two different sizes. I won't have to wear padding on the other side for evenness. I'll be getting back to normal, as opposed to the "normal" I am at now, which I like to refer to as: expander normal. Expander normal is living my life in as much balance as I can, and taking into consideration the pain I feel every day, and working WITH that pain to manage my life. Regular normal will be me (just a little enhanced). Once I heal from the surgery and once I get used to the implants, I'll really be ME again, which is amazing. The implants, even though they'll eventually be replaced (and maybe even sooner than later if I get another mastectomy), are still there for life. Whether it's them or new ones 10 years later, they will still be a part of my life forever. And that doesn't worry me. I know I can get used to anything if given enough time. I can create new normals. I just feel, after this surgery, my new normal won't be so much different than my old normal. Really, truly.
So I'm confident in that once this fence comes down I will be able to actually see the wedding a little better, and will better believe it is on the way, and can get excited about it with my new body, and can get used to me, with my new body.
I have been going back and forth, since my diagnosis in April and mastectomy in May, between feeling that after my implant surgery that all of this would be over, to then feeling like it won't ever be over, because I'll always be worried and anxious about getting another breast cancer in the other breast, and be having constant testing and screenings. I still believe both of those things: after my surgery on Oct. 27, yes, this part will be over. This breast cancer. I was lucky and blessed in everything that happened, from beginning to end: cancer caught early, no invasive cancer, no spreading to the lymph nodes, hormone negative = no chemotherapy, no radiation and no hormone therapy. Lucky, lucky, lucky. Lucky that two surgeries "took care of it" and that my final surgery is 5 months before the wedding, and a month and half away from my bridal shower. As much as I'm trying to "take that and run with it," I know myself better than that, and that's that I can't do that. I don't think like that, and life just isn't like that. I know this isn't really all the way over, and it may never be. But I have to remember, that as much as it isn't over completely, PARTS of it will be over after this surgery, and the longer I get away from it, more and more PARTS will become over. And further than that, as each day goes by, my thoughts and feelings will change. My perspectives will change. Meaning progress will continue to be made, despite what's actually OVER or not.
My encouragement each day is knowing today, and believing tomorrow, that I'll feel differently in the days, weeks and months to come. That my mind will constantly be turning and at work to find new places of comfort. So I'll end with what I feel today:
I actually SEE the fence now, and I see it coming down following my surgery. And I see myself healing well, and feeling back to normal without this rock in my chest. And I see the fence coming down after that. And true, there may be other fences that stand in the way atop my many hills and lands of life, but eventually they come down, and if they don't, I work on getting them down. I don't let them stay there. Because there are far too many good things that wait behind them.

Refreshed

Well, believe it or not, I actually feel BETTER after my doctor's appointment yesterday, despite my very negative feelings about it, and me pretty much convincing myself nothing good would come out of it, and it would only promote further anxiety, if that was even possible. That's no reflection, at all, however, on the doctor. He is wonderful and amazing. And he was yesterday. I brought up the concerns I had planned to, and he listened and responded, both patiently and intently. I have never, ever felt rushed by him, and I have never, ever felt that any of my questions or concerns were stupid or unfounded. Everyone should have a doctor like that.
Anyway, a lot happened yesterday, so I'll do my best to sum everything up. My outcome, emotionally and mentally speaking: I'm feeling a little bit better. And I'll take that!
We talked about some of the testing I've had done since I last saw him in April, including an echo/EKG, which came back normal, a bone density test, and numerous genetic tests (the BRCA1, BRCA2 and BART - which I've discussed in previous posts - and all came back negative or normal.)
We also talked about my breast cancer treatment, and it made me feel really good that his thoughts were consistent with those of my breast surgeon. I also brought up my risk for developing breast cancer in the other breast, and my desire for a preventive mastectomy on my other side.
He said my chances, given my specific diagnosis, were low for both having a breast cancer recurrence on the right side, and for getting a new breast cancer on the other side. I told him my many reasons for wanting a preventive mastectomy, and he said my reasons were real, and that they made sense, and he made me feel like I had every right to get it done. I also asked him if other women who had DCIS on one side got another mastectomy on the other side for prevention, or what he recommends, or his opinions on it. He said most women with DCIS don't do it, although of the ones who do, most of them are older (60+) and when they had DCIS, had multiple sites of it. But my concerns, such as having breast cancer once already, having dense breast tissue that could lead to more screenings and biopsies and anxiety, and my age, he said were completely valid in considering a preventive mastectomy.
We also talked about Tamoxifen, a hormone therapy drug, women take for 5 years after having breast cancer, to help prevent its recurrence and prevent a new breast cancer. However, this drug is only recommended as a standard of care for women with HR/PR+ breast cancer. I was hormone negative. So although it's not recommended for me, my doctor brought it up anyway because he wanted to present every possible option to me. The reason it's not recommended typically for ER/PR- breast cancer is because the benefits are unknown - in that they actually haven't been studied.
Hormone therapy is something I have chosen not to do, for reasons other than the obvious "results have not been studied in ER/PR- breast cancer." There are a variety of risks associated with it, and those risks are not only higher, but more front and center, in someone of my age. First there's the risk of uterine cancer, and apparently, in young women who are still menstruating, this is extremely hard to detect, so if on Tamoxifan, I would need additional screening and testing all the time, and, ha, I'd have a higher chance of another cancer, which is ironic, because this drug is supposed to lower my risk of another cancer! So one cancer risk lowered, but another becomes higher? Nope. And then there's the issue of early menopause, and the fact that while on the drug I wouldn't be able to have children. Considering I'd take the drug for five years and Sean and I have been talking about starting to try for kids in the 1-2 years after we're married, well, it doesn't fit into the picture. Obviously, needless to say, the risks associated with this drug significantly outweigh the benefits - and even FURTHER - the benefits haven't even been studied in women with my type of breast cancer! Although hormone therapy is not on the table, I appreciate my doctor bringing it up and discussing it with me, because I like to know all my options, and even all the options out there, even if some don't fit into my picture.
And another thing needless to say, but I'm saying it anyway, if given the option, my doctor recommends mastectomy over hormone therapy. He is in no way telling me to get a preventive mastectomy, or even recommending I consider it. I just asked him if he had to choose one, which he'd choose.
So other than that we talked about my bone density levels, which have been low for like 7 years now. I have osteopenia, the stage before osteoporosis. He ordered a Vitamin D test to check those levels, and depending on what they are, may or may not recommend a calcium supplement. He also ordered a CBC - complete blood count. AND! (this guy is wonderful!) - got me into a very well-respected doctor, through Hershey, for my primary care physician. I have one currently, but will be seeing this new woman because my doctor recommends her specifically for me, and they got me into see her next week (which is fast!) so I'll have that established.
So all in all I am on the ups from this last appointment, and feel good about the decisions I've made, which is to consider a preventive mastectomy. I'll either set up a phone conference with my breast surgeon in Hershey before my April appointment to discuss my concerns and reasons, and to get her input, or I'll wait until April. Either way I am going to move ahead in making her aware of my wishes, and I think the sooner she knows what I'm thinking, the better I'll feel.
So yesterday was a good day, and today was better than yesterday.

Photo: Me in my Lifetime shirt made for the movie, FIVE! I absolutely LOVED the movie! I think it captured perfectly the many different emotions, feelings, perspectives, types, and faces of women who get breast cancer. I fell in love with each character, and their stories, and was sad when the movie ended. I wanted the movie to continue so I could feel like I was living their lives WITH these women - both during the breast cancer and after. Good job, Lifetime, and THANK YOU for making this movie!

17, Five & pumpkins

We're 17 days away from my surgery now, and Lifetime's FIVE premieres tonight at 9 p.m.! Both very exciting things. Please tune in tonight if you can, or set your DVR! Although I received a movie viewing kit from Lifetime complete with tank tops, martini shakers, popcorn, napkins and coasters, I decided not to have a viewing party for this movie. I figure there might be lots of crying, and I'd like to see it the first time just with Sean. I will wear my Lifetime tank top, though, and I'm sure we'll have fun snacks!
Since my "stuck" post I have been on the ups. I'm still struggling a lot with the same stuff I was struggling with before, but I'm managing a little better, and I'm entering more happiness and healing things into my life, and removing things that are toxic.
Since "The Game Plan," I have meditated (though not for more than 15 minutes each time -- hey, it takes practice!), have avoided reading breast cancer news on the Internet, and have put real effort into looking at the big picture and the positives. I have, and continue to, work hard to understand my fear and to manage it. I can't exactly get rid of it, but I can manage it so that it doesn't control my life. That is the goal, anyway.
This past weekend was filled with both relaxation Saturday, and fun plans Sunday. Saturday, though it was Yom Kippur, I didn't fast or spend the day in synagogue which was a little sad for me. But since Sean was at home with his family, I took the time to have a relaxing two days to myself. I caught up on some TV shows, did laundry, meditation, ran errands and went for a 30-minute walk around the neighborhood. Then Sean came back Saturday evening and we had a relaxing evening, just the two of us. Sunday was filled with pumpkin-picking at a nearby farm (and honey crisp apple-purchasing!), and brunch and walking at the park with girlfriends. I walked more than three miles Sunday which felt amazing. It was nice to soak up this "hot" October weather while it lasted.
Sunday, though busy, felt pretty balanced to me. It wasn't too much to make me angry or in pain; it was just enough to get my mood up. The sunshine and exercise always helps, too.
Though I'm still very new to meditation and still figuring it out, I think it is going to be something I enjoy. I know I need to work hard to actually get "there" - a place where I literally am not, at all, thinking about ANYTHING. Seriously, it sounds like the hardest thing ever. Because, honestly, when I sit down with my eyes closed on my purple yoga mat with my eye mask on, in the dark, all I want to do is think about everything - my feelings, anxieties, fears, concerns, etc. But that isn't meditation. It's about getting AWAY from those things and finding a place all your own, free of all those thoughts. You concentrate on your breathing, and feel and learn the rhythm of your breath and get to a place where you're nowhere, so to speak. And that sounds exactly like what I need. Because lately my fears have taken over my life. I need to work on finding a place where I don't have that. If I can accomplish that, for an hour each day, I think that will help. I can never be sure how much something will help, or what the results will be, but I feel it is the best thing to try right now. Because when I'm at work thoughts rush around my head. Before sleep, more thoughts. Worries. Fear. When I'm working out. It doesn't matter if I'm walking or lifting weights or doing crunches, or even holding a yoga pose, I'm still consumed by fear. It's a little less when I'm out with friends because it helps put things into perspective. But I need to find a place where I don't have that, because it's hard for me to see a place in my life right now where there is no fear or anxiety relating to breast cancer. If I can prove to myself that there IS such a place and I can actually GET to it, I will be making progress. And I want to make progress.
And oftentimes, when I feel I AM making progress, and getting to a "new normal," something sets me back, like my recent appointment with my genetic counselor. Although there was no news that came from that, we still spent two hours talking about my health, which makes me anxious. And I have a doctor's appointment tomorrow with the oncologist I saw when I was first diagnosed. I met with him originally because if I were to need chemotherapy it would have been done out of his office, instead of Hershey, because he is local. Luckily and thankfully I didn't need chemotherapy, but my breast surgeon has recommended I meet with him again, at the end of all this, to "close the loop." Though I'm not expecting anything much to come out of it tomorrow, I know by now that is the wrong assumption. No matter what actually happens during it, every time I leave a doctor's appointment I am nervous, scared and anxious all over again. There are always new things, believe it or not, to talk about. I have some questions I want to bring up with the doctor tomorrow (and he works directly with my breast surgeon so he is a good person to ask), such as what my chances for recurrence are, or what my risks are for developing breast cancer in the other breast. I might feel better, or worse, if I hear this information straight from the doctor. Or, my anxiety could be exactly the same after. No matter what, though, I've come to learn you can never EVER expect anything from any of these appointments. You always leave with new information, new thoughts, new perspectives. Some are good, but mostly they promote further anxiety and fear. Believe it or not there's always more to talk about, even if you feel you've exhausted EVERY topic. Nope. Never. I never know what to expect and that's hard. Because I just want to be done with it all. I don't want to talk to doctors about this anymore. I don't want them telling me new things I had never even considered. UGH. So I guess I should prepare for another setback after tomorrow, just as I was on the ups.
I always try to imagine: "what could he/she POSSIBLY tell me that I didn't already know?" or "what could he/she POSSIBLY tell me that would completely change how I feel about everything?" Well, the possibilities are endless. Really. It has never been black and white. There has never been a straight "yes" or "no" answer. After a while, conclusions form based on what seems like hundreds of gray areas. Nothing is straightforward in any of this. And, even as I know that, nothing ceases to surprise me. So I can try to prepare for my appointment for tomorrow, but the best way I can think of to prepare is to not prepare. Either way I think I'll be a mess. Because I think even if he, a doctor, tells me my chances are really LOW of getting another breast cancer, I'll STILL be anxious. Nothing has helped with that so far. I'm still anxious, even AFTER I had a clinical breast exam AND and ultrasound and nothing showed up as a cause for concern. I'm still reeling. Part of that is a mental thing, and part of that is the fact that they found what they thought was a (benign) fibroadenoma in my left breast and asked me if I wanted to have it biopsied. That's what I mean. NOTHING is black and white. Why couldn't I have just had an ultrasound and had the doctors say: "everything looks good!" and then I'd leave the office. But no. It's "we THINK this looks benign but do you want us to biopsy it for peace of mind?" PEACE OF MIND?! ARE YOU KIDDING ME?! LEAVE ME ALONE! No, I don't want another biopsy, in my healthy breast, after undergoing numerous tests and biopsies for breast cancer, and eventually a mastectomy, in the other breast! That's the hard part of all this, and probably something that is a huge factor in my anxiety, and that is that nothing (repeat: nothing) is, and ever has been, straightforward. So can you really blame me for wanting another mastectomy?! Who would go through screenings and tests and possibly more biopsies just because doctors THINK or don't THINK something is benign or not?! There is never a straight answer. There is guessing and assumptions, and I don't function that way, especially when it comes to my health.
So, back on topic: I'll still be surprised at what happens tomorrow, even though nothing is SUPPOSED to happen. We can never be too sure. And honestly, I've had lots of "surprises" lately. I'd just like to be away from my breast cancer. I'd like to hop on my wedding cushion and float, like a magic carpet in Aladdin, for the next five months and three weeks until the wedding. And I'd like to GET TO and HAVE the wedding. Can we just do that? Thanks.
On a happier note, and as part of me looking at the big picture and being thankful for my wonderful, fabulous, and self-proclaimed glamorous life, I have included pictures from yesterday at the pumpkin patch. The little kids and the hayrides and the pumpkins and the apples. Just darling! I love fall. Yes, happy times. I can't forget that. I can't forget how wonderful my life, and the people in it, really are. Fear shouldn't trump that. Nothing should trump that. And that's what I'm working on. One of the best things about trying to accomplish something is that there is no limit to how much, how hard, and how long you can work towards something.

So, because I love lists, here is a working list of the things I'm working on:
1. Not letting fear trump life. Fear is small and life is big. Really big. Life should trump fear.
2. Meditation. Can I actually sit there and think about virtually nothing? Can I?
3. Getting back to my "new normal" which is, right now, loving fall-flavored candles, coffee in the morning while watching any of my DVR'd Bravo or HGTV shows, Essie nail polish all day every day, my thick, fluffy pink bathrobe which is appropriate now because it's October, and being in pain from the expander, but loving all that stuff more than the expander causes pain.
4. Counting down to my surgery and to the wedding.
5. Finding, and living, the best I can, in balance.
6. Taking control of my fear by talking to doctors and getting real answers, and by talking with my therapist, friends and family about my feelings. And getting it out of my system, even if it takes hours every day. And even if it's never really all out.
7. Mentally and physically planning entire outfits (dress, shoes, accessories) for my bridal shower, bachelorette weekend, two Aufrufs and rehearsal dinner.
8. Loving life the "Marjorie Way"


Alright. There we have it. Eight things I'm working on. I can be satisfied just by working on them. I might not have answers or conclusions, but I have my game plan and it's in action. It's happening. Me trying to be me. Trying to find the light, the hope. Addressing the things that cloud it. And working through them. Working through the thorns. I used that metaphor many months ago. I said my journey, back then, was working through the thorns to find the roses. Though my journey today, and the thorns today, are very different than they were even one month ago, I'm still working through them. They may be less sharp, and there may be more roses today. But the thorns definitely are not gone. But that's OK. The best I can ask of myself is to keep trudging because, eventually, I'll get there. And even if I don't, I can be happy knowing that me being strong is trying, every day. Sometimes that's the hardest part: trying and trying and trying. But if that can be the hardest part right now, and I'm doing it, I have to be doing a good job, right?
In words inspired by my mom, and a phrase I've used many times in life (and even once in this blog), when I think "I can't do this" I have to remember: I already am.

The Game Plan

The Game Plan

As I sip my morning coffee in a black mug I bought from the dollar store just for work, with a new black sweater dress, white pashmina scarf, leggings and leather boots, I am ready to start this day as a good one, and have come up with a game plan to move forward in these most recent struggles.
Call it my "light" shining through, or call it me liking to have a plan of action to make the current situation better for overall survival. Call it whatever you want, but I've decided I need a plan to help me work on this part of my life.
Yesterday evening Sean and I went on a five-mile walk. It litereally was JUST what I needed. The fresh, crisp fall air and the exercise helped clear my head and put life into perspective. We talked about the wedding and other fun plans, and I enjoyed watching the kids on their bikes, people walking their dogs or mowing their lawns, and admiring the gardens and porch displays of our neighbors. Our neighborhood is beautiful. It reminds me of living in Reston. Lots of hiking and walking trails, parks, trees, flowers, and beautiful, beautiful homes with kids on the lawn and dogs starting out the window. It made me happy to be alive and made me realize there is so much more to life than what I was feeling yesterday. All of this is so much bigger.
Afterwards I had a nice dinner of Campbell's tomato rice soup, and then we had a Skype session with our music guy for the wedding. It turned out to be such a wonderful evening. I was at rock bottom by the end of the workday yesterday, but after that walk I was on my way up.
A few things will go into this game plan of mine. The first is that I will eliminate the toxic things in my life, or the things that make me more stressed, nervous and anxious. And one of those things is reading breast cancer information on the Internet. Granted, October is Breast Cancer Awareness Month so articles and information and reminders are everywhere, but I know, for me personally, as much as I want to learn and soak in all the new information I can, I know it's not good for me. Not now anyway. Reading too much makes me too paranoid. I have to remember, that no matter what information I read online, my doctors treated my individual case, and gave me information based on my individual case. What I read does not necessarily apply to me.
So just like it is, and will continue to be, hard to force myself NOT to do self-exams more than once a month (since doing so will make me insane), I've got to force myself to, for right now, anyway, NOT read articles on breast cancer. They, too, make me insane.
So I will remove that toxic part of my life, and I will enter more healing aspects. Both my mom and therapist recommended meditation and yoga (some poses I can do even with the expander), so I'll do that. I have a yoga mat at home, and plan to set up a "yoga space" for myself, with the mat, a meditation CD, and maybe something lavender-scented. I will use what I've learned in both yoga and meditation, and try to center myself. No phones, no TVs, no Internet. Just me and my meditation. I think that will have healing qualities.
Another healing aspect I need to bring into my life, and this may take some work, is to look at my left breast differently, as silly as that may sound. Right now, though it is cancer-free, I look at it as just as foreign and contaminated as the other one that got cancer in it. Me being scared of getting cancer in the other breast makes me hate it, even though it's healthy. I look at it and I want it gone. We know that can't happen yet. We know there's no fast course of action to make it gone. So until then I will try to look at it, and think of it, differently. I must look at it like I did before the breast cancer: that it is a part of me and I love it and cherish it. It's NOT toxic. There's no reason for me to hate it. I've got to appreciate it now, whether or not it comes off in the future. For now I have it and it's NOT the enemy.
So with removing things that make me anxious (reading articles on the Internet about breast cancer), entering healing activities (meditation and yoga), and working on a different way of thinking, I believe I can get out of this "stuck" place and rise up. It will take work, but I've got time.
My main focus right now is on centering MYSELF, in appreciating myself. I always said I treated myself well by way of healthy eating and exercise. But mentally, I wasn't doing that. I need to look deeper within and work on healing the things that need healing. And i can do this. It will be hard, but I've got to, for myself. I have the ability to change how I think and behave. We all do. And even if I can't accomplish those three things today, or even weeks or months from now, at least I came up with them, and at least I started. It's better than nothing.

Stuck

I feel very trapped right now. Like I'm stuck in a place of physical pain (from the expander), emotional pain (from what I'm going through, and from the expander) and hightened anxiety, that may or may not stem from awaiting the test results of Monday.
Despite discussing it outloud to Sean, my mom and my therapist, I have become literally paranoid about developing breast cancer in the other breast, particularly in these next six months before the wedding. What makes it worse is that I would be the one to find it since I'm not having a mammogram until April (after the wedding), and I'm the one who is supposed to do self-exams every month. I've already dicusssed how it was traumatizing to find the first lump, and it will be equally traumatizing to continue to do, on a regular basis, something that traumatized me in the first place. It's a catch-22. If I don't do self-exams I can maybe (but probably not) prevent all this anxiety from thinking I'll find something. But also, if I don't do them I could miss something that could end up saving my life.
I literally don't feel ANY better about ANYTHING now that my treatment is over. My breast cancer is gone. Tumor removed. Clear margin. I'm done. I was lucky. So very lucky I didn't have chemotherapy or radiation. So lucky that now I'm only waiting for my reconstructive surgery. But I don't feel any better. And it's really got nothing to do with the possibility of me having Li-Fraumeni Syndrome. Whether or not I test positive for it, I still got cancer twice, and I still got breast cancer, and that still (gene or no gene) raises my chances of getting another breast cancer. I'd be paranoid no matter what. But at least, with Li-Fraumeni, I'd have a logical and medical "reason" to get another mastectomy. But I'd also have higher chances of more cancer. So my question is this: where, exactly, does the fear stop? And when does it stop? No matter what genetic mutations I do or do not have does not, at all, change the fact that I'm paranoid, and feel paralyzed by fear. It has become something I think about almost every minute of every day. And that is a terrible, terrible way to live.
I try to convince myself that there is no reason, at this very point in time, for me to believe I'll get breast cancer again, and that I should go along with everything that's planned: keep my left breast, get my implants, and work on mentally getting over this anxiety, even if it takes 20 years.
It's gotten to the point where I don't actually believe my fear of getting breast cancer in the other breast is a mental thing; I really, truly believe I have logical, scientific reasons to be scared, and logical, scientific reasons to get another mastectomy. Even IF I choose to get a mastectomy, it wouldn't be until after the wedding, or even months or years after that, so I still have to LIVE, until then, with constant fear and anxiety. You know what that equals? NO.WAY.OUT. That I literally have to find a way to DEAL with this, when I really believe there is no way to, except to have another mastectomy.
I know that my surgery is now less than a month away - about three weeks - so, really we're in the home stretch. But that doesn't change the fact that I'm still in pain every single second of every single day, and it's exhausting to go to work, to live life, in constant pain, and in a constant reminder that I got dealt this card. I'm supposed to live and work amongst people who don't have expanders. People who can open doors without pain, who can carry shoulder bags, and who can get startled without having muscle contractions and spasms in their chest. No matter how hard I try, or how you look at it, I'm still angry, despite every attempt not to be. I'm angry that I have the expander in, and I'm angry that I live in fear and anxiety, and that I actually have reason to live in fear and anxiety. I try so hard not to be mad. I try to look at all the positive things in my life, and trust me, I do see them. I try to think of myself as lucky and blessed, and I do believe I am. I try to tell myself I have a lot of wonderful, amazing things that other people don't have. But I'm still pissed off. VERY pissed off. And worst of all, there's no place for me to go. I'm supposed to live every day for the next three weeks with this expander, driving 45 minutes to work and back, BEING at work, and living my life and going along with my plans in CONSTANT pain. It's almost like I can't do this anymore. I can't pretend anymore. I can go to work because I have to for health insurance, but that's it. That's all I want to do. I want to go to work, and come home, and be done for the day. Because I've got to prepare myself (physically and mentally) to do it all over again the following day. And I can't. It's impossible. I guess it's not "impossible" since it's being done, but it's near impossible. Perhaps one of the most difficult, trying, daunting things is to go to work every day. To drive that distance with the expander, to be amongst people who are ignorant to the pain I'm always, always in, to pretend to be happy and carefree. And to do it every day. Near impossible. Yes, I'm doing it. But now I feel that I can't anymore. I can't keep up with anything. Before it was a matter of finding balance. Of still keeping my plans, and making plans with friends, but not going overboard because it caused more physical pain, which in turn caused more mental pain. So now I feel like I've got to be done until after my surgery. How do I possibly explain this to people? I look and act fine on the outside, but inside I've got a hard-as-a-rock device lodged under my chest wall that constantly pulls and stretches my muscles and my skin. How do I explain to people that I don't want to go out and have fun not because I'm depressed and giving up, but because I'M IN SO MUCH PHYSICAL PAIN?! I can't expect people to really, fully understand that. And that sucks. And that makes me angry. It's not that I want people to feel bad for me; I just don't want them to think I'm fine, because I'm not. I'm definitely not.
But people I work with, and people I interview for stories, would never, ever guess that a 26-year-old would be dealing with what I'm dealing with. You look at me and you'd never know I have a rock under my chest. And I used to think that would be good - that I could live my life and the normal public would never guess anything was wrong. That I was LUCKY to have my hair, and that on the outside I look like a normal, healthy person. But instead, I actually feel like that is a curse. Because people expect me to be a certain way based on what I look like. They see someone who is in shape, who dresses well, who wears makeup, and who's got a rock on her finger, and they assume I'm the luckiest woman in the world. And yes, in 99 percent of the ways I am. I do believe I am the luckiest woman in the world because of the life I have, the friends and family I have, and the support I have, the spirit I have, and Sean. So it's OK for ME to know deep down I am lucky. But I don't want strangers to assume that based on what I look like. Because when people assume just because you're young and look healthy that nothing's wrong, it makes me mad. Because I work hard every day to put on this face, and to deal with things that plague me: two cancers and a dad who has been missing since 2003. (Noticed I never mentioned that before in this blog, but I'm baring all now so no going back.) I won't get too into my dad, but what happened with him is something that helps shape my life so I can't NOT mention it. It can't always be avoided. I'm sure it will come up again.
One thing I've never wanted for myself was to become a bitter, angry person, and to think that being bitter and angry was OK because of everything I've been through. But it's not OK to ever be like that, in my opinion. What keeps us living, and what makes our lives worth it, and what enriches us day to day is our spirit. We can't prevent terrible things from happening to us. But we can act on those things. We can choose to let them make us or break us. We can choose how we want to live our lives, despite what happens to us.
We can wake up in the morning and agree to have the day. That is why I put on makeup, brew myself a pot of coffee and watch design shows on DVR before I head to work. Because I'm trying to get myself excited for the day. That is why I try to sing in the car while driving to work, or atleast listen to songs I enjoy. That is why at work, I work hard, get engulfed in my writing, and am friends with all my co-workers. I laugh all day with them, talk about life with them. That is why after work I drive home, and try to sing in the car again. That is why I host parties, or go out with friends, continue with my life. Because I often ask myself: what choice do I have? Not living is not really an option. So I choose to live, but have to do so in a balanced way until the expander is out. And every day that is a struggle, and today, I just became officially, officially sick of it.
So I'll say it like it is, and this is what I would say if I were to tell somebody, right here and now, how I'm feeling: I'm having a very, very difficult time today. I'm sick of being in pain, sick of living in pain, and sick of being in fear. I'm sick of being anxious about getting breast cancer again, and also sick of feeling like I'll always be anxious about it. I'm scared that I'll always be scared. I'm mad that I'm always in pain, and mad that I have a reason to be anxious, and mad that I AM anxious. Mad that being fearful is a part of my life, and mad that the expander is still in me. Mad I feel I have to pretend at work, or in life. Mad that I have a rock under my chest, and mad that I'm expected to live like this. Mad, mad, mad, and sad, sad, sad.
Mad that my neck and back hurt all the time. Mad that I can't lift my right arm above my head without my chest muscles spasming. Mad that I have to open doors carefully. Mad that I have to be cautious around other people because if they bump into me it could really, really hurt. Mad that I can't exercise like a regular person. Mad that being in pain makes everything extra hard. Mad that staying out late makes the expander hurt more. Mad that sleeping hurts. What makes the being mad part worse is that it's ongoing. That it's always there. Mad that I'm trapped. Mad that I think, even when the expander is out and the pain from it is no longer there, that I'll still be anxious. I'll still be scared. I can only hope that's not the case.
And mad that I can't plan my wedding free of fear or anxiety. That might be the worst of all. Is that when I'm planning and ordering and picturing it all, I am blocked, trapped, by this fear that it's not quite OK yet, and I don't know when, or if it will be. I just want to know: when will it be OK?
I literally can't live the way I'm living right now - mentally, physically, emotionally. It's near impossible.
But the funny thing is, that no matter how many times I say I can't do this anymore, and that I won't be happy anymore, and that I'll curl up in a ball and avoid life because that's what I want to do, I won't. I might say I'm sick of it all, but I'll still do it. I might say I hate the world, but I'll still live in it. I might say I'm just done. But I won't be. Because the truth is, my spirit can be tampered with, but it can never be fully crushed. And I'm choosing to live my life fully not just because I think that's the best option for my well-being, and the healthiest choice, but because, deep, deep down, I don't really have a choice. My spirit fuels, full-force, the way I live each day. It always shines through, even if it's just a tiny speck of light in a dark hole. Because today, as dark of a day this is, and as much as I hate "this day," there's still a little, tiny bit of light. Because that's really who I am, and I know that. That I look for the good in every situation. I always have and I always will. Yes, I can be mad and angry and even say I hate the world. But I'm still here, and living. A part of that is me forcing myself to. And a part of that is just me being me. This is what I do. This is Marjorie. The hope never fades, and the light is still there. My name in Hebrew means "To Light." I used to think that meant I light up other people's lives, and maybe the world. But I now know there's more to it. It means my "light" is always there, or that I always have light. Sometimes it's the size of a light bulb and sometimes it's the size of the sun, but it's always there, doing what it's supposed to.
The light is my spirit and my reason for living. It enables me to look at the good, and find millions of reasons to be happy.

Part 2:
So I started writing earlier and stopped, which isn't usually how my posts go. Usually I can find a conclusion and sum everything up right away. But today that isn't the case. Hours later, I'm still having a very, very difficult time with just about everything (breast cancer related).
I have officially decided I am going to bring up the possibility of a preventive mastectomy at my next doctor's appointment in April - when I will see my breast surgeon for a mammogram. I've done way too much research that can possibly be helpful for me, but have figured out I have two high risk factors, and therefore am considered either moderate or high risk, for develping breast cancer again. Both moderate and high risk women consider preventive mastectomies. What makes me potentially a candidate for doing this, and therefore makes me NOT crazy for being scared: is 1) Having breast cancer once significantly increases your risk for developing another breast cancer, including on the other side, and 2) Having dense breasts (which I have been told I have by numerous doctors who read my mammograms and ultrasounds), significantly increases your breast cancer risk, ESPECIALLY if you've had it in one breast. Density increases the risk of getting it in the other breast. Density increases your risk for DCIS (which I had) and hormone receptor-negative breast cancer. (which I had).
Now I've already figured out that I don't want to live my life in fear. I don't want to have constant screenings all the time. I can't live like that. I know it's early to decide that, which is why I haven't DECIDED if I'm having a mastectomy or not. I've decided I don't want screenings all the time and I don't want to live in fear. And in addition to that, I've decided on a game plan, and that is to discuss this option with my doctor in April. I will bring up my concerns and fears, and I guarantee they'll still be there seven months from now, and I'll discuss my risk factors and if this surgery makes sense.
I know getting a mastectomy doesn't make your breast cancer risk 0. You can still develop cancer in whatever tissue is left over, and usually some tissue is left over in the chest wall, armpit, etc. But having a mastectomy can reduce the risk of getting breast cancer, either for the first time, or again, by as much as 90 percent. YES. I will be able to live like that. I can live knowing that. I cannot live like this, and frankly, I refuse to.
This decision to discuss this option with my doctor is partially based on fear and anxiety, which I will continue to work through with my therapist. But mostly it's based on the fact that I have real reason to be worried. I have real risk factors. Real, real things that make my risk higher. I'm not pulling this out of my arse; this stuff is real and it has me concerned.
Most of all, I don't want to spend the rest of my life looking for cancer in the other breast. I know if I were to have it removed I'd still have screening - most likely MRI or something like that. But the doctors wouldn't always be looking, searching, suspicious. No more "suspicious" areas on mammograms, no more biopsies, no more dense tissue getting in the way of detecting a tumor. How do people live like this? I can't and I won't. I just hope I can "deal" with this until April, because frankly, I don't think I'm able to. Not now, and not months from now. I am literally stuck in this place of fear and I want a way out. And my only way out is this game plan I've decided on today. But I don't feel that's enough. I want more and I want action.
The only "light" I have at the end of this post and at the end of this day is the possibility that I won't feel this crappy tomorrow. I once said, in a previous post, that something I can count on for hope and encouragement is the fact that whatever feelings I have now may not be my feelings later. My emotions may change. There's always hope in knowing life moves on and the brain can form new thoughts. That is what I'm hanging onto right now - that tomorrow will be better. It has to be.

Laundry part 2: Disconnected

As more feelings (laundry) unfold, I have new thoughts, as I would expect. I think I'll actually have lots of thoughts about today for a while.
It seems every time I am getting back to life, in a matter of speaking (meaning focusing on friends, plans and the wedding), I have a little setback. These setbacks come in the form of a doctor's appointment which snaps me back into breast cancer reality. Today's appointments, both with the plastic surgeon and genetic counselor, I did NOT foresee as setbacks; rather I saw the first as exciting plans in moving forward, and the second, well, I didn't really know what to expect.
The meeting with the genetic counselor, as I mentioned before, WAS thorough and informative, but it DID set me back to breast cancer reality. It reminded me I'm not exactly where I want to be, or that I'm still IN THIS.
It was this, piece of dirt, almost, in my "moving-forward, clean world." Just yesterday I had purchased some red skinny jeans, which I had been searching for forever, and spent an hour on the phone with my mom just talking about wedding stuff. I was in a different place, and now today, I feel disconnected from the life I was trying so hard to have.

Life.
After today's meeting and all this talk about genetic mutations, when I think about all the fun things that are planned in the coming weeks, and how the wedding is now less than six months away, it all seems so distant, like this new thing today is what's dominating. Not distant in far away, although that's part of it, but distant in that those things aren't really exciting me right now. And I know it won't be like that forever. I'll have a few weeks until the test results come back to let this all sink in, and then I'll do what I'll do with the information given to me. But because today's information was all new, and because there was lots of it, I feel at a very different place right now than I did earlier this morning. I feel disconnected from "my life" which seemed very different this morning.

Breast cancer.
Bizarre to think how today's events make me feel disconnected from breast cancer because that's what brought this all about in the first place, so it may be more accurate to say I feel disconnected from the breast cancer I once thought I knew. This new take on breast cancer is different to me. This breast cancer (in a new light) is IF I test positive for the gene, everything I previously believed about how I thought I got breast cancer will be irrelevant.
I read A LOT of breast cancer articles. Too many, too often. I make myself paranoid. I read about all the potential carcinogens in what we eat and what we put on our body, and I think about what I'm eating and what I'm putting on my body. I won't microwave plastic anymore with my food, and I've almost completely sworn off body products that contain parfum/fragrance, phalates and parabens. I won't drink water out of a plastic water bottle, but instead have moved onto stainless steel. I read about all these things and make myself crazy trying to avoid everything in life. But who can blame me? Studies are being done, and some of this stuff is really harmful. But if this gene is responsible for my breast cancer, all the parabens and plastic seems irrelevant because it wouldn't be environmental factors that caused the cancer, it will have been genes. So I feel disconnected from what I thought I thought I knew. Or moreso, disconnected from the stuff I was pretending to know, or pretending to explain, or making excuses about, or finding reasons and answers for. I'll still be mindful and proactive with my health and I believe I'll always watch what I eat or what I put on my body, but maybe I won't be so crazy about ingredients in shampoo or in food. Maybe I'll rest a little from the carcinogen scare. Or maybe I won't. But either way, if I have this gene, it will put this whole experience in a new light. It will put a new spin on the why-I-got-breast-cancer-puzzle.

So right now I feel a little disconnected, both from my life, and, pending the results, possibly from what I thought I thought I knew about why I got breast cancer.
And at this point, I think I'm handling things pretty well, and am pretty OK. But so much of me, pretty much all the time, doesn't want that. I don't want to have to be handling this OK. I don't want to have to be strong. I am and I will be. But I don't want to have to be. But I guess sometimes we're not given that choice.

Lots of laundry today

Today I met with a genetic counselor. To be honest, I went in not knowing a single thing: what we were going to talk about, or where it was all going. I had millions of questions prepared in my mind, but the doctor answered all of them before I could even get to them. It was extremely informative, but now my mind is all abuzz, as to be expected following something like this.
But first, let's talk about my appointment with my plastic surgeon, since that also happened today.
(The first part of this post will be all the descriptive information from today in a nutshell. The second part will be my emotional take on everything. If I can get there.)
So first I had my pre-op appointment and consultation with my plastic surgeon. I signed the consent form and he ordered my implants, and we are a GO for my Oct. 27 surgery! He said recovery time is about 2-3 weeks total. About 1-2 weeks until I'm back to work (but most likely less), and about a month until I can resume more strenuous activities, such as heavy lifting or exercise. All in all it seems like a relatively easy surgery. No drains (yay!) and it will be done outpatient.
Then I met with a genetic counselor, which was recommend by my breast surgeon, given my strong personal cancer history and family cancer history. Thus far I've tested negative for BRCA1 and BRCA2, as well as the BART genes, all of which significantly increase the risk of getting breast cancer. So the genetic doctor recommended another test that looks for Li-Fraumeni Syndrome.
We had about a 2-hour consultation period where she thoroughly explained the benefits and risks of getting the test done, and after speaking with her I decided to go ahead with the test. If I test positive, it means I have a very high chance of getting another cancer in life. (Which is one reason I originally was hesitant: I didn't want to live my life in constant fear and anxiety) However, a huge benefit is that if I do test positive, I am eligible (and insurance would cover) early and in-depth health/cancer screening I wouldn't otherwise be eligible for, such as colonoscopies starting at age 26 instead of 50, etc. Also, I would seriously consider getting a prophylactic mastectomy on my left side. (a preventive mastectomy), since having the mutation would mean I have a high chance of getting breast cancer again on the other side.
If I test negative for Li-Fraumeni, the doctor might recommend further genetic testing.
What makes Li-Fraumeni likely, and what makes me eligible for the test in the first place, is that I have a family history on my mom's side of Leukemia (me and my uncle), breast cancer at a young age (me) and Liposarcoma (my mom's father). All of those cancers are commonly seen in people who have Li-Fraumeni Syndrome or who carry the mutation. Having the mutation doesn't mean you will get cancer, but in my case, it would help explain the two cancers at a young age, since I tested negative for three of the main breast cancer genes.
Another benefit to getting tested for Li-Fraumeni is that Sean and I will be able to make more informed decisions when it comes time to have kids, because if I AM a carrier, I WILL pass it along to a child because it's a dominant trait.
If I do test positive, I agree I don't exactly want to live my life going through health screenings all the time, but if something WERE to happen again, the early screenings would be beneficial for my outcome. And that's basically the main thing. I want to be on top of my health all the time, even if it means screenings all the time. If it can save my life it's worth it to know the results. I'll just have to work really hard on managazing my anxiety.
It's interesting because there are good and bad things about both scenarios: if I test positive or negative. And it's really hard to sort out my feelings since there is a LOT going through my mind. I always say after getting this much information I need to let it "marinate" for a few days before I can write about it. But sometimes, jumping right in is the thing to do. So here I am, jumping. Splash. Enter the "emotional take." Here goes:
I always said, and convinced myself, that me getting breast cancer had something to do with the Leukemia treatment. That somehow the three years of chemotherapy poisoned me and caused me to get breast cancer, despite every single doctor I've seen NOT thinking that. So why did I think that? Because it made the most sense to me. I was negative for BRCA1, BRCA2 and BART. So it wasn't that. My tumor was negative for hormones, so such things as being on birth control pills for eight years, aren't to blame. So that's out. So what WAS it? There HAS to be a REASON. It doesn't make sense that I'd just GET breast cancer at 26. I have a really hard time, even remotely comprehending, I just have really bad luck.
If I test positive for this syndrome, this could be the end of the what-ifs, as far as medical testing goes. Meaning, there are always genes and chromosomes that testing could miss, but if I test positive here, to all the doctors' knowledge, this syndrome could be what caused the Leukemia and early-onset breast cancer. Not just "could be" but probably IS, actually.
There might finally be an answer to this puzzle that's now become a part of my life.
Would knowing I have a genetic mutation that makes me susceptible to cancer be good? NO. Of course not. Having it wouldn't be good, and knowing about it would be both bad and good. I'd go through life (I'm assuming) knowing I already had two cancers and could have more. I'd always be on the "lookout." I'd think every ache or pain or twinge in my body was cancer. Because, if I carry the gene, those thoughts and fears aren't that far-fetched. If I have the gene, I may be right to be paranoid about every little thing. And the testing. The testing and the screenings for breast, colon, and other cancers. Constant testing and screenings. Good = if I get cancer again (G-d forbid), the screenings would help catch it early and would hopefully positively affect my outcome. Bad = constant testing. Constant worrying. As if I don't worry enough already.
In the beginning of this breast cancer journey I had two thoughts about the rest of my life and my health. The first thought was that since I've had cancer twice now, cancer may just be a part of my life. I might get it again, and if I don't get it again, I'll constantly be on the alert for it. And the second thought was that this breast cancer, although a second cancer in my life, is it. It's the last one I'll have. I'll live until I'm 97 (this age was decided by me many years ago) and I'll never, ever get cancer again.
Being positive for this mutation could mean my first thought comes to life a little bit more: that cancer is always something I'm going to have to deal with, either directly or indirectly.

So YES, if I do indeed have Li-Fraumeni Syndrome, here is what it COULD mean for me (I say "could" because my thoughts change on an almost-daily basis):

1. I will be worried about getting another cancer. The worry is something I'll have to live with.
2. I'll always be screened early and often for cancer, which both causes anxiety, but also could help save my life. I'll take a break from my list here to admit I was pretty much sold on NOT getting the test when I first met with the doctor, and it wasn't until she explained the screening until my ears perked up. The early screening, no matter how nerve-wracking or tedious it may be, was the main reason I decided to get the test done. Because I realize this is my LIFE I'm talking about. And now I'm not only interested in doing what I can to save my life, but I'll be married in a few months, and I've got other lives to worry about. It's not just me anymore. I'll have a husband, and hopefully, eventually, children (who are healthy!). I want to do what I can to save my life for Sean and whatever family I create. If this is something I can do to be proactive, it seems obvious to me: why WOULDN'T I have this test done? Why would I ever pass up the opportunity to know more about my health and actually take action when it comes to screening and maybe even prevention?! It was like a "duh" moment for me when she said one benefit to having the test and knowing the results is the steps I could take. Why wouldn't I take steps to maybe prevent other cancers if I can, and catch them early if I can? From that moment on, my decision was made, and what I had to do was crystal clear in my mind. Part of all this is knowing and trying to be prepared (though you never really can) for the anxiety I'll feel if I test positive, but the alternative option isn't really an option for me. I'm 26 and have lots of years left to live. One reason my breast cancer was caught so early was because I caught it. I was being proactive. One reason the Leuekemia was caught when it was is because I said I wasn't feeling well. I am a strong advocate for knowing your body and looking out for yourself. And this test gives me the power to do that on a deeper level. This test allows me to take the action I always promised myself I'd take.
3. Besides the anxiety and worry associated with constant testing, I'll also have to work on and work through the anger I'll feel (and I already feel) with having this gene. I'm already angry I got cancer once, and I'm already angry I got cancer twice. But if I know I have this syndrome I'll be angry that I have the syndrome. I'll be angry I have this very rare, insane, crazy mutation. And I'll be angry knowing this rare, insane, crazy mutation will be a part of my life forever.
4. Preventive mastectomy on my other side. I'm already so extremely worried about getting breast cancer again that I've quite seriously thought about getting another mastectomy, though it wasn't something my doctor recommended. As much as I say I feel I've lost some of my feminity from having a mastectomy, and as much as that's still true, I'd easily take another one over worrying every day. I want them both OFF. One turned against me, so the other could also. What was once a part of me because foreign, contaminated. I know a lot of me wanting to have another mastectomy is based on anxiety, and is something MANY breast cancer survivors face. And I know therapy will help me deal with that anxiety. And I believed that as each day passed I would get further from the breast cancer and begin to feel better and not be as anxious. That I could work through all my fears and move on without having another mastectomy. But if I have this gene, all that goes out the window. My fears become more real and having another mastectomy becomes a real option.

If I DO NOT have Li-Fraumeni Syndrome, here is what it COULD mean:

1. We don't know what caused me to get cancer twice before the age of 27. I might get further genetic testing, but from what the doctor said, there's really only one more test they could do. Not knowing would make me crazy. It would make me wonder if I do have a chance of getting cancer again, and what screening is the best option, or if I would never get cancer again. In other words: I wouldn't know what I would worry about, and if my worry would be unfounded. Do I worry about cancer, or do I not?
2. Further into No. 1, what happened to me remains a mystery and my medical history remains a puzzle. I would feel like some medical anomaly. Part of that makes me feel like I've just had really, really bad luck.
And that's it. Those two things: we wouldn't know. And to be completely honest, I still think I'd be just as worried about getting cancer again if I don't have the gene, than if I do. Honestly.
It's easier said than done to say I shouldn't "jump to conclusions" because we don't know the results yet. But I have to sort out my thoughts and prepare myself the best I can. If I don't think about this now, it will be harder to four weeks from now.
I've never felt so engaged in science as I did today when meeting with the genetic counselor. The two hours we spent in her office felt like five minutes. I took in, more than I ever have before, every single iota (I love to use this word when I can) of information she gave. I felt like my brain was a washcloth and what she was saying was water, or even something more "soakable." I studied the pictures of the chromosomes, and imagined what they looked like inside blood. And I studied the family health tree she created. I went into her office doubtful and cloudy, unclear of what the purpose of the appointment was. And I left feeling almost renewed, like I had just discovered gold. Sure, the news wasn't either good or bad. It wasn't even news. It was information. And it made sense. Though my emotions are pretty obviously all over the place, what she told us and taught us today was very, very clear. It might be the "answer" we're looking for, or it could be nothing. Only time will tell. I do know, though, that this appointment was one of the most informative, beneficial appointments I've ever had.
So I'll end with that. Today I learned a lot, and have many feelings about the results of this test. Sorting them out is the first step to letting them be real, to letting all of this be real. I could really, actually have some syndrome that makes me more likely to get cancer. More than once. And knowing that could be great for me, or it could be bad. It could bring solace knowing there's a "reason" for all this, or it could create more confusion and uncertainty. Or, we could learn nothing from all this.
Today I'm not searching for one specific thought on all this. I won't have that. Likely ever. All I'm doing is "sorting." Like laundry, almost. This thought goes here, this one goes there. They become folded, and form stacks. And I work through them, or like laundry, eventually put them in their proper places.

Some articles about Li-Fraumeni:
http://ghr.nlm.nih.gov/condition/li-fraumeni-syndrome
http://en.wikipedia.org/wiki/Li-Fraumeni_syndrome
http://emedicine.medscape.com/article/987356-overview
http://www.cancer.net/patient/Cancer+Types/Li-Fraumeni+Syndrome