Just be ...part 2

For as long as I can remember I have always, always a problem letting things go. If something upsetting were to happen, I'd focus on it. Fixate on it. It would take all my attention for hours or days or weeks, either until I resolved it myself, or it went away on its own. I've discovered during this breast cancer and health journey, especially through speaking with my therapist, that part of why I don't let things go is because I feel, for some bizarre, unhealthy reason, that being worried about something - whether it's possibly saying the wrong thing to someone and caring what they think - to being worried about getting cancer again - gives me some sort of control. I've mentioned this in previous posts: being worried or anxious about something makes me feel in control, because as soon as I "let something go" or allow myself to be carefree or have relief of anxiety, I feel I could be "attacked" at any moment. That something bad could happen and completely shake me. That I wouldn't be prepared for it. That keeping my worries right where I can see them, so to speak (as my therapist described), helps me somehow. I picture my worries in a gray colored box at the side of my head. They are there and they are visibile. I can touch them and see them. I have somehow, through life events and especially recently, created this habit, or way of doing things, in where keeping my worries where I can see them gives me control over my life, whether it makes sense or not, whether it works or not, whether it's productive or not. It's actually none of those things. Sure, I can see it making sense in the way that I understand MY reasoning for doing it. But it definitely doesn't work, and it is most certainly NOT productive. I've already established this. I've already discovered this. I KNOW that being worried doesn't help me take control of my life OR prepare for things in life. Being worried is being worried. That's all it is. So the first few steps to solving a problem is accepting it, addressing it, figuring out why I do it.
I know I do it. I know I fixate on something to the point where it controls my life.
I know WHY I do it. I believe it gives me some control over my life.
I even know a little bit of how to stop. I focus on OTHER things. It seems simple, right?
I've always been an advocate of living life fully, appreciating the small things, doing good in the world, making the best of what you have and being thankful for everything you have. I am all of these things. But there's something now I have to work on. And I know it will take time, and I've said before that I'm up to the challenge. And really, I have to be up to the challenge. If I don't work on this I won't get anywhere.
The issue now is that I don't know how to BE. It sounds stupid, but I assure you, it's not.
My definition of me BEING is being me in a way that is not compromised by my worries or anxities. Sure, it's OK to be worried or anxious occasionally, and that is a part of human nature. But by BEING, I wouldn't let these worries run my life. I'd live in a way where this health problem, sure, is a part of my life, but it doesn't control my life and is definitely not all of my life. I have way too many other amazing things in life to focus on, and I know that. And I thank G-d every day for what I have in life, and how lucky I am to have such a full, fantastic, loved, blessed life. And as much as sometimes I hate it, I do thank G-d for my personality, in that I'm able to bounce back as fast as I can, am able to see the good in life and in people, am thankful for what I have, am strong, am willing, and smart and wise. I'm a lot of good things. I know that. I value myself and my life tremendously. But I feel very limited right now, since learning about my genetic mutation and increased cancer risk. I'm limited in life because as soon as I get excited or happy about something I turn it off and focus on the worry. I feel I shouldn't be fully happy or excited about anything because then I won't be prepared if something goes wrong.
This, to me, is the ultimate challenge. If I can, for the first time in my life, find a way to put the worry in a place where it doesn't affect me this much, I would have accomplished something amazing. I know it's amplified now. But before all this, it was still there. It's always been there. Since the day I was born.
What I want is to allow myself to be excited and happy completely fully, in the way I would be, as me, just BEING. In all its glory, I want to let myself feel the things I do naturally, and not cut myself short, or shut myself out, of good feelings. Because good feelings help, and they give you a sense of perspective. But I want more than that. I want actual power. Power over my own thoughts. Power to let myself be me, naturally. And that's feeling all my thoughts and emotions in full, NOT hindered by this recent news and the worry about the future that comes with.
That's happiness and the good things in life trumping OVER worries about pains or lumps or what the future holds. Because as hard as it is to convince myself that worry actually does nothing - I have to try. It is a process. It will take time. But I know if I can accomplish a sense of power over my negative feelings I will be better.
I always say, to myself and others, that we must live fully no matter what. That there really isn't another way to live. Whether life is short or long. Whether we have our health now or not. Nobody knows what the future brings.
So, for me, I'm going to do what I've always done: live how I would normally live. Fun plans and friends and family and travel. Manicures and facials and parties and girls' nights in and girls' nights out. Guilty pleasures on TV, and guilty pleasures in shopping. Chocolate and coffee. Exercise. I got that already. I'm doing that already. But part of that is limited by what I tell myself in my mind, and that's to worry, to be prepared, to have "control," when this sense of "control" is false. Being worried about something indefinitely is not at all having control. It's not having control over your life and what could happen in it, but rather LIMITING good, happy feelings and fun. When I have this false sense of control by being worried, what I'm really doing is hindering my other thoughts and feelings - the good ones - that should be hightened and need to be hightened.
I've got really good, happy things coming up this weekend. I told myself, if I wasn't worried about this new lump in my neck, despite the ultrasound which turned out OK, I would be more excited. I'd be packed already, and my outfits would be planned. So why CAN'T I have that?! I won't let myself. Well, now it's time to open the gates. Gold, large, shiny gates. (Not heaven, though that's what it seems like). These gates, once opened, will lead me to a new place. One where I am free to enjoy things fully and without compromise. One where worry is just worry, and it doesn't equal control or preparation.
It's challenging because part of this whole struggle is trying not to feel hindered, as I'm planning my wedding and getting ready to get married, and having bridal showers and other events, by my breast cancer these past few months and by the recent news about my genetic mutation. The hardest part of all is knowing I have these new worries and fears during a time where I'm supposed to feel nothing but happiness. I often wonder how the wedding planning and all the related events would go if I weren't dealing with these terrible health issues. To me, that's the hardest, most devestating part. And it's always, been since day 1: the unfairness that I have to deal with this while I'm going through this moment in my life. And I say it in nearly every blog post because it reigns true every single day. It is something I work on every day.
So I must continiously remind myself: this IS everything I could have ever hoped it to be, and more. From the moment I got engaged, to now, only four months away! The planning and parties have been phenomenal. Expander or not. Breast cancer or not. Li Freumani or not. But, like a good friend and devoted reader, Ellen, commented recently: "Marjie, this is LIFE!" It seldom goes the way we plan it to. Things happen. Would I have wanted to have breast cancer? No. Especially not now. But when would be a good time, really? Never. Cancer and illness and other terrible things can never come at a "convienent" time; it's what makes life life. It's what makes life bad, but also good, if you can find the good hidden within the bad.
So, here I am. Working on just BEING. I'll end this post on a positive note, because I do feel overall positive right now. What does it mean to "just be"?
Well, I don't know the answer to that yet. It's something I'm still working on. But I also believe nobody ever knows how to just "be"; it's something we, as humans, are always working on, and it's something that's always evolving.
But today, writing this post and figuring out my thoughts are "being." And today I'll open those gates a little more and let myself into a healthier, more relaxed place. We can go one of two ways. Forward or backwards.
And we can live one of two ways: In the direction of life, or ...
When I look at my life, on a personal, specific level: my choice is pretty clear, and it's always been pretty clear. How do I want to do this? How do I want to live my life? How do I want to BE?

Just be

I feel really guilty I haven't posted in now, for the first time since starting my blog, in over a week! To be honest, I've been really overwhelmed lately. So much so that when I think about typing a new blog post I just can't. I can't gather my thoughts. I have too much to say. Which, really, hasn't ever been a problem before because usually I just start writing and my thoughts come together. And also, honestly, not posting in over a week has equaled me feeling really blocked. Like a blackhead or pimple or something. I feel I need to get everything out - or as much as I really can.
So last week I met with my plastic surgeon for my second post-op appointment. All went really well, and he lifted all of my restrictions! He even said I can "lift a truck tire" if I really wanted, but I assured him I'd be doing nothing of the sort. But I really am so happy to be able to lift weights again, workout and stretch. Sean and I went to the gym yesterday, and it felt amazing to be able to ride the bike, and I'm sure soon I'll start running again.
I also met with my genetic counselor, and this is the part that's overwhelming. The point of the visit was to discuss more of my specific case, what it means for my health, etc. So at this point my mom is going to get tested, and they are testing my tissue from my mastectomy to see if the mutation is present there also, since it was only found in some of my blood cells and not all of them. Testing the tissue will help determine where else the mutation is, and can kind of direct my care even more.
We also talked about options for having children, ranging from just having them and seeing what happens since my child will probably have a 50-50 chance of inheriting the mutation, to adopting, to egg implantation, where they remove my eggs and only implant the healthy ones - the ones without the mutation. The price for that starts at like $10,000. We also talked about my health screenings moving forward, how a preventive mastectomy was recommended (but until then I would get mammograms alternated with MRIs every six months) plus colonoscopies plus full body scans and imaging, plus being a part of a NIH study, possibly, plus going to Maryland every year for a Li Fraumeni conference, plus meeting new doctors, plus joining a support group, plus if I'd have a mastectomy before having kids or after, plus if I want to breast feed, plus how and when we should talk about having children plus plus plus plus PLUS. Too much to think about. Too many huge life decisions. Too much to wrap my head around.
PLUS I had a scare last week when I found a lump in my neck. I put myself into an all-out raging panic and anxiety attack. Luckily within a day I was in to see a doctor, and the following day got an ultrasound of the lump. So, I'm somewhat breathing again because the radiologist believes the lump is just a benign lymph node, and at this point is too small to biopsy, so the recommendation is to watch it, and have another ultrasound in 6-8 weeks. They will send the results to my oncologist to see if he has any other recommendations.
Is that enough to deal with in a week? Yes. So I'm trying, right now, to just BE. Not sure how that's going. I'll let you know as soon as I figure it out.
How do I BE, exactly? Living in constant fear because I have Li Fraumeni? Every time I find a "lump" am I going to be like this? Literally shut down for days. I know they probably think the lump is fine, but I'm really not ready to let it go. Is this how I'll just live now? Is this how I'll just BE now? Always requesting ultrasounds and biopsies and fine needle aspirations because everything could be cancer? I have real, documented reasons to be scared about getting cancer again. So how do I live like this? I am doing my best to go on with daily life ... make plans with friends, do things I enjoy and just be me. That, I'm afraid, is really going to take some work.
So once again it's about finding balance, but this time in a different way than when I had the expander and was waiting for my final implant surgery. Now, it's about BEING:
1. How do I live knowing I have a genetic mutation that makes me prone to cancer?
2. How do I plan my wedding and my life and my family knowing I could pass this mutation along?
3. How do I live with constant screenings and testing?
4. How do I live while waiting for my next mastectomy? Especially knowing that I've decided to have one.
5. How do I live while making the decision of WHEN to have my mastectomy - before or after I have kids? Breast cancer risk increases with age, especially for me, but it's also harder to have children the older you get. How exactly do I fit that decision into my life?
How exactly do I fit Li Fraumeni into my life?
So, this blog will go from ...
Planning my wedding while coping with breast cancer to planning my life while living with Li Fraumeni Syndrome.

From July to today

Looking through my old blog posts, I noticed I started Pink and Pearls nearly four months ago. When I look back at my very first entries in July, and even August, I feel like I'm an outsider, reading someone else's blog. I feel that what I wrote about a few months ago, though my feelings and emotions were strong, and much of what I feel then I still feel now, seems far away. The me with the expander feels like a different me than the me with the implants. And the me with Li Fraumeni Syndrome feels like a different me than the me who had just breast cancer (as opposed to a rare genetic mutation).

So in this post I'll reflect on my first entry on July 20, and what has changed, or remained the same since then. Though this breast cancer journey started in April with my diagnosis, and has luckily come to an end for now, what I learned last week will impact my life indefinitely.

The July me: I was just getting started with blogging and had a really difficult time typing fast enough to keep up with my feelings. There was too much to say, all the time, so I felt I would never, ever be able to get it all down in a blog. But I did and it was, and is, amazing: it's a form of emotional relief, and a way for me to share my feelings with friends, family and even strangers. It helps those close to me, and outsiders, understand, on a deeper level what I'm going through medically, and how I feels about all of it. I believe planning a wedding, in itself, is something to blog about. I believe fighting breast cancer, in itself, is something to blog about. But combine the two? Now THAT's a blog.

The expander me: During the first few months of having the expander I barely noticed it, mostly because it took a while to fill all the way up, and because I was focusing on other things. When I first got the expander in May, during my mastectomy surgery, much wasn't clear until the test results came back. Had the cancer spread and would I need chemotherapy? And then, after those results came back, we were worrying about the margin, and the question of radiation came into the picture. Instead, I chose a second, skin-removing surgery, which I'm even more glad now I chose, given that those with Li Fraumeni should avoid radiation if possible. So there was much waiting for results, waiting for the next step. I didn't have time to think about, or even care about, the "rock" in my chest. Once the second surgery was over and it was clear my treatment had come to an end, I was ready to get back to life and further plan my wedding, but instead became trapped by the pain of the expander. Life, as I was getting back to it, was hindered by the pain, and I got sick of living with the expander. Being in pain all the time made me very, very angry, and hard to see past the experience.

The me before Li Fraumeni: I just thought I was really unlucky, and that the world was a sick, weird place when I got diagnosed with cancer for a second time, before the age of 30. Much remained a mystery. Why breast cancer at such a young age? Since the cancer was hormone negative, what caused it? No outside influences or factors? And I tested negative for the BRCA genes. So we didn't know. Nobody knew and I was confused. Now, I have some more answers, and am still letting those answers sink in, a little at a time. It doesn't change what happened, but maybe helps explain it. It doesn't make me happy to have this information, but it doesn't make me completely upset, either. It will take me some time to learn exactly it what and how I feel about it.

The implant me: I'm still sore and in pain sometimes, but it's nothing compared to the pain of the expander. Sleeping, and getting up and down from sitting or being in bed, is the most painful. And presently, no bras are comfortable. It will still be a few weeks until I can wear underwire, so I'm wearing regular cotton bras and sports bras, but nothing is really that comfortable. I'm happy with how everything turned out, and although I'm still sore, I am more patient now, because I know, unlike the expander, this pain really WILL go away and I really WILL heal completely. What comes next is to be determined, in terms of my health and another mastectomy. So my challenge now is trying not to focus on that, and just focus on the NOW - and that's my final surgery is over, it went well, I'm feeling good and getting back to life, and all is on schedule for my life and my wedding. I want to enjoy today, and not let this recent news plague and haunt me. Sure, it will be a challenge. But I'm up to it.

So now I move forward. Today, I am done with this breast cancer journey. It's hard to say "done with THE breast cancer journey" because I'm considering another mastectomy, and that means going through the whole process again. But for now, I'm done with THIS part. And that's fine. That's wonderful. I made it through ... from July to today.

My surprise shower, regrouping and life!

Showered with love

It has been an eventful week! This past weekend was packed with friends, family and football, and a surprise bridal shower thrown in my honor at a beautiful cafe outside of Philadelphia! To say I was surprised is an understatement! About 50 family and friends from in and around the Philadelphia area showed up. The shower, which was beautifully hosted by Sean's Bubbe and mother, was held in a back room of the restaurant. There were pink flowers (roses included!) on the tables, pink gift bag favors filled with candles and heart-shaped photo coasters, and a specialty menu with lunch options and my name on the top! We played "gift bingo" while I opened my gifts, some of the girls made me a beautiful "bouquet" of ribbons from the presents, and we dined, laughed, hugged and kissed over delicious meals and a fantastic pink cake!
There are no words to describe how I felt when I walked into the room - what I THOUGHT would be a small family brunch with Sean's family - and saw the entire room was full of people I knew, who were all there just to shower me!
At first I didn't understand what was going on. When I first walked into the room and everyone yelled "surprise!" I saw my mom, grandmother and aunt first, from Northern Virginia, and then looked around the room and thought: "Do I know everyone here?" It was quick a shock and it took a while to sink in. But as soon as I realized all that was for me, I was basically floating with glee. The afternoon was so elegant, so beautiful, so classic. So much had gone into the planning, which was very clear. I was overwhelmed with opening all the gifts. I had three or four other ladies helping me sort and open, including my mom, Sean's mom and my cousin Alison who I hadn't seen in about 7 years, and was THRILLED she was there!
Ribbons and tissue paper were flying around, and I was holding up gifts and posing for pictures, and shouting out the names of each gift-giver, as the rest of the room "ooh-ed" and "ahhh-ed!" I felt like a princess, atop my throne. I felt like a bride-to-be. I felt beautiful and loved and cushioned on pretty, pink delicate clouds.
We all screamed at excitement when gifts were opened from our registry, like table linens, a coffee-maker, fondue set and electric knife. We all breathed in, in awe, when I opened gorgeous Judaica gifts, like a beautiful seder plate, draydel statue, menorah and candle sticks. Each card I opened was beautiful, and all the gift bags had pictures of little wedding dresses or brides. As I opened my gifts with everyone around me, it hit me, again, that I'm getting married. That I'm a bride. That these beautiful gifts are for my upcoming married life with Sean. I was entering a new stage in my life. A happy stage. A happily-forever-after stage.
In that moment, at my shower, nothing else mattered except that I was there with people who loved me, and I was happy and having fun. The news of the past week of my genetic mutation seemed distant.

Letting it sink in

Since I found out about having Li Fraumeni Syndrome last week, I have been slowly and steadily letting the information soak in. I would call it "trickling." There are lots of emotions I have surrounding this news, but instead of seeing it as a huge dark cloud hanging over my head, I see it as a small grey-ish cloud, hanging at the side of my head. Something I can deal with, slowly. Something I can work though. The problem is, I have not even begun to understand how this news will change my life. I cannot even begin to fathom what this will mean for me, and maybe (hopefully not) my family. I can say to myself now: having this syndrome means I will be screened often for cancer. Cancer will always, or at least most of the time, be on my mind. I'll be scared of getting cancer again. I'll be nervous about any and all persisting or weird symptoms. The rest of my life will be filled with talking and thinking about this. Health will always be an issue in my life. I can say those things now, in preparation for what's to come. But I don't think I can grasp, even a teensy bit, of what all this means. How will constantly being screened for cancer affect my life, my well-being, my future? How will I emotionally and mentally handle awaiting the test results of these screenings? How will I handle waiting for results when I KNOW I am prone to cancer. How will I handle always, always, always discussing my health, always meeting with doctors, always worrying about the next step? What effect will all of that have on my quality of life, and how will it affect those around me? Will I always be nervous, anxious, scared, upset, angry at the world? Or will I cope with this in a way that works for me - never letting it away from my mind, but not letting it run my life? Only time will tell. I don't know the answers to those questions, but what I DO know is that I DON'T know how I will handle this, weeks from now and 10 years from now.
What I don't know is how Sean and I will go about having children. What I do know is that I want to have another masctectomy. What I don't know is when. What I don't know is if I can handle going through that surgery again, followed by months of painful expansions, and another surgery. What I don't know is if I can handle NOT having a mastectomy and be constantly worried about getting breast cancer again, especially now that I know I have a mutation. What I don't know is how I will go through life wondering if my cancer days are over, or if I will get hit with it again. What I don't know is how I will manage to live my life without letting this run my life. I believe I can do that, because I'm doing it now. But also, now, we don't have all the pieces to the puzzle. We're awaiting my tissue test, and my mom's testing. We don't know anything about my eggs and if this can be passed on.
So, there is a lot I don't know. I can safely say that. But like I said before, this doesn't change the past. It doesn't change the fact that I've had cancer twice and I always knew that wasn't normal. If I tested negative for this mutation, would I still be worried about getting cancer again, or would I convince myself that these two cancers were a fluke and I'd be fine? What would I really believe? Would I still look for answers? Or would I let this all go?
Now, though, I am excited to be getting back to life, excited for the wedding and all the planning that comes with, and want to really live fully, especially these next few months. I don't know what will happen once we get these next results back - if I'll have to meet with new doctors right away, and start screening right away. I hope not. Actually, I almost refuse to, not in these next few months. All I want to do is live life, without all this, and focus on this wedding we've been planning since February. And I think I have every right to want that. I just went through six months of hell, WHILE planning my wedding. I beat breast cancer WHILE planning my wedding. That stage is over and now I deserve to rest. To focus on the life a normal 26-year-old bride-to-be would. No more doctors or screenings or talk about cancer. I want this moment because I deserve it. I was lucky enough to be able to get through my breast cancer in time to enjoy the remaining part of my wedding planning, and the months leading up to the wedding. I don't want to add anything negative to that list, anything that could possibly create extra stress and anxiety. I had enough of that these past six months. I don't see any reason to add it again, when there's no real emergency, in my mind. I just want to have this moment. Let me have this moment. I will rally for this moment. I shouldn't have to fight for that - peace and happiness four months out from my wedding. But I am and I will.
So right now I'm having this moment. I'm loving this moment. And no matter what has happened these past few months, and what's to happen in the next, nothing - nothing can take away this blissful moment. I won't let it.
There's a weird, yet strong, sense of power that comes from having to pull yourself out of a dark hole when the life you lead is surrounded by light and love. It's like pulling yourself up and out into the world that you created, or that got created because of you. My world of light and love is my fiance, my wedding, my family, friends and wonderful life. It's all there. No matter what. No matter what I go through or what news I receive. My life is all still there. And it will be there. So let me be in it.
It's not like "live each day like it's your first/last"; for me, it's just living and enjoying and loving because those are the things we CAN control. Realizing there are things in life that are bad, and that you cannot control, is hard. And realizing these things have become a part of your life, and are not temporary, also is hard. And I won't say none of this isn't hard. In fact, all of it is. Learning I have a rare genetic mutation. That changes my life. Mostly, in ways I cannot yet comprehend. And it's hard to be 26 and to "deal" with this, especially while I'm planning my wedding. So I'll hold onto, emphasize and spread the good. And that's that I love my life and I always will. We have to create our happiness, and therefore what we want out of life. And I vow to do just that, every single day.

*Shower pictures to be posted in the next entry! So be excited!

Getting up again

Yesterday I heard the song "Tubthumping" by Chumbawamba on the radio, where the chorus of the song goes: "I get knocked down, but I get up again. You're never gonna' keep me down." And at that very moment, after learning just the day before I carry some crazy, weird, rare genetic mutation that makes me prone to cancer, and that helps explain me getting cancer twice, I felt empowered. I'm not exactly sure what that song is about, but the chorus lyrics made me feel like, for the first time in a very, very, very long time, STRONG. I don't feel strong often, no matter how many times people tell me I am. I cry and complain and worry and whine. I yell and shout and get angry at the world. But I AM strong, despite those things. And what makes me strong isn't just that I survived cancer twice, or that I found out I may face other cancers in my lifetime, or that my family might face cancer, but that I am happy. Really, really happy. And I want to continue to BE happy. And I want to do everything I can to be happy as much as I can. But even more than that, I am happy. Right now. The happiest I've ever been in my entire life. Most of that is due to the fact that I have found, am with, and get to be with for the rest of my life, the person who makes me happy. The person I love most in this world, who makes my life better every day. And the fact that I love his family, and they love me, and that I have felt welcomed into them since I first met Sean. And the fact that my own family is phenomenal, and has provided me with unconditional support and strength. And the fact that I have the BEST friends in the entire universe. People who make me so happy, and make my life so incredibly full with fun and love and more fun and love. And the fact that despite my commute (which will become more hellish when it starts snowing), I have a job I enjoy. Sure, there are aspects of it I'm not exactly happy with (the pay, for one), but the truth of the matter is, I get to write every day, and I have never, never, for one ounce of a minute, been sick of writing. Writing is something I could do forever and be happy. And the fact that I'm planning my wedding, which is now four months and three weeks away, and the planning is fun and amazing, and I'm loving every moment of being engaged. And the fact that when the planning is over, and when the wedding is over, I have a lifetime of happiness and love to look forward to. I have a lifetime of creating a family, and living life in the fullest possible way.
This doesn't change the fact that breast cancer, and now possibly other cancers, and screening and tests, will be a part of my life forever. And getting the news about the genetic mutation on Wednesday did change my life. It devestated me. It created a cloud over my head, knowing for the rest of my life my health will be something I will be worried about. Screenings and tests and anxieties. My health will be on my mind forever. I'll have to facr huge decisions when it comes to having kids, or getting a preventive mastectomy. Huge, huge decisions most people don't have to face. Especially before the age of 30. But all that aside, I am happy. I feel cozy and comfortable, and for the first time in a long time, at absolute peace. Absolute peace despite this cloud over my head. And I'm not sure why. Because this mutation is something I can't control? Because maybe I expected it? Because I always knew, from having two cancers by the age of 26, that something wasn't right anyway, and that I was a puzzle.
So I decided two things yesterday: first, that I get knocked down, but I get up again. And second, I'm going to continue to create my happiness. And one of those ways is by getting eyelash extensions for my wedding.
Crazy? That's my idea of living life?! YES! What about sky diving or climbing Mount Everest or running a marathin? I'll get to those things, but for now, eyelash extensions are MY very own version of living happily!
I had always wanted to get eyelash extensions for the wedding. I already do (luckily) have full, long and thick eyelashes, but I wanted more eye drama for my wedding. At my eyebrow-waxing appointment last night my aesthetician, whom I ADORE, told me she was in Philadelphia for some training, since my salon will be adding a new service: eyelash extensions! Now these aren't day-of extensions. These get put in (it takes about two hours), and they last up to 3 months! I decided then and there that's what I wanted to do. Before, I would have maybe considered it, but then talked myself out of it because it seemed to crazy or unncessary, but then I thought: THIS is the time to do the crazy and unnecessary. THIS is the moment to live. I'm getting married. I want ridiculously dramatic eyelashes. Now, I'm aware most people don't think of getting eyelash extensions, or anything beauty-related, when they think of living life, but I'm not here to impress anyone. I want to live the way I want to live, and if this seems risky to me, then so be it! We all have different ideas of what is crazy and fun, and the idea of me getting eyelash extensions is MY happiness right now.
We should do what makes us happy, and now isn't the time for me to hold back. Not only am I getting married in a few months, but I am a two-time cancer survivor, and just a few days ago found out I could face cancer again. Two glasses of wine that night helped a little, but what's going to help in the long run is creating my own life, my own happiness. I already do that in a variety of ways. I believe I live life incredibly fully. I create plans with friends, maintain friendships that have lasted from a few months to my entire life, travel, host parties, try to do good in the world, continue to educate myself, let myself indulge, but also take incredibly good care of my body, work on ways to de-stress, engulf myself in things that matter to me, such as my religion, politics, and health. I work hard and give mostly everything my all. When I want to do something I do it. When I want to succeed at something I do everything in my power to. I am determined and motivated. I surround myself with the people I love and who love me, and with things that make me happy. I do what makes me happy, but I also allow myself to try new things and to be daring, and to put myself in seemingly uncomfortable situations so I can learn and experience more. I remove tocix and negative things from my life. So I will continue to life fully. And I'll continue to do things that make me happy. And I'll continue to be happy.
And I'll always, always, always ... get up again.

And now, please check out a fellow blogger, and now a friend of mine, Lainie's blog. She is a 27-year-old five-time cancer survivor with Li Fraumeni Syndrome. But she's made her life so much more than that. I cannot even begin to fathom what she has, and is going through. Despite all this, she's taken control of her life and has maintained strength and courage. Her story should help us all put our lives into perspective. Her story is one of utmost inspiration.
She's also in the process of planning her wedding, so she's a fellow bride-to-be! :)

http://lifraumenilainie.wordpress.com/

Surreal

If you remember a little over a month ago I had some genetic testing done (further than the breast cancer genes BRCA1 and BRCA 2 and the BART - which all came back normal) for the p53 gene to help explain my personal history of cancer at such a young age. Unfortunately, the test came back positive, meaning I am a carrier of the genetic mutation, which also means it appears I have Li Freumeni Syndrome, a rare disorder which only runs in about 400 families in the entire world. The syndrome makes you very susceptible to cancer.
The interesting thing about my test results is that while the test showed I do carry the genetic mutation, it doesn't appear on all of the cells. (usually it appears on all cells or no cells, but in my case, it showed up as a "mosiac" meaning it only appeared on some of the cells.) So while I AM a carrier, this test doesn't conclude where I have the mutation, and when I got it. So my genetic counselor is recommending further testing for me, and for my mom to be tested. The next test I do will determine WHERE the mutations are (cells, blood, etc.) and WHEN the mutation appeared. It can either appear at the time of conception, or shortly after birth. The purpose of figuring that out is to determine if I'll pass the mutation along to a child. Since Sean and I would like to have kids, I need to get this test done. If I carry the mutation in my eggs there are some scientific options for having a child. They could take my eggs out and analyze them, and only implant the ones without the mutation, etc. So there's that. My mom's test results will also help determine when the mutation appeared.
The second thing is, having this syndrome makes having more cancers in life a possibility, so I would have to be screened often for everything. Besides regular testing, I'd have full body MRIs, etc. I'll also be referred to a support group so I can find out about resources, and I'll also be participating in a study.
Until we have the second test results back, we won't know to what extent this all is, but my doctor said since my two cancers were completely different (Leukemia being a cancer of the blood and breast cancer being a cancer of the tissue) it's very likely the mutation is in all of those places, (blood, tissue, cells, etc.) as opposed to only one, which I guess it can be in some cases.
Anyway, this is all very confusing and there is so much more information, but this is what I got out of the conversation today with my doctor. It might not be 100 percent correct, but this is the best I can do in explaining all of this. As I learn more and more information sinks in, and after the second test, hopefully it will all become clearer.

This was very upsetting news for me. It basically changes my life. I'll always be on the lookout for other cancers, will have to worry about my future childen, etc. I wish I didn't have to deal with this now, just as I'm starting to get back to work, and just as I'm recovering from my last surgery, and emotionally recovering from the past 6 months which were some of the hardest of my life.
All I wanted to do now was focus on the wedding, and although this test isn't urgent and it's not an emergency, it is more stress and anxiety, and more things to think about, and huge life decisions to make:
Having babies, getting another mastectomy ...

It's ironic to me that I would get this news on my first day back at work, my first day of getting back to "real life." Just as things are looking up and settling down. Just as I'm regaining my strength and my faith. Just as I'm excited again about the things to come. But I'll still be excited. Yes, this changes my life. This news really, really changes my life. But honestly, as devestated as I am, I'm not too shocked or surprised; I knew there was a chance of this. I chose to have the test done, and chose to get the results, and chose to deal with the results when they came. I invested in this. This was my choice. I already knew I got cancer twice before the age of 30. This doesn't change that or make it more or less true. What happened already happened. Now we're just trying to figure out why.
The good in all this - and there IS something - is that now I might have a reason for all this - something to explain my cancers, and with this knowledge I can take proper steps in my health , including screenings, etc. It's surreal that this will be a part of my life now, and even more surreal that this has happened, when it is so, so rare. Just like I take what I can out of every situation, and turn the bad into good with my past two cancers, I will do the same with this. I'll educate myself and be vigilant. It sucks, but I guess life sucks, and isn't always fair, and at the end of the day I'm still the happiest right now than I've ever been in my life, and nothing (not even two cancers and a rare disorder) can take that away from me. Even with this news today, I still have everything in the world - more than I could have ever hoped for.

Bits of November

It's hard to believe we're well into the month of November. I'm already focusing on so many happy things that are coming up these next few weeks and months. There are so many exciting activities and plans, from wedding planning and pre-wedding events to birthdays and traveling, Thanksgiving, Hanukkah, my birthday, New Years, friends' weddings, the list goes on and on. In less than two weeks I'll be taking the train to Pittsburgh to visit some of my very best friends. Traveling is something I was unable to do alone with the expander, and when I did travel, it was painful and more exhausting than it should have been. But now, as I'm getting back to myself and will feel better and better each day, I can look forward to doing the things I love again, without being restricted by the expander and all the pain it caused. I know I've said it a million times, but life will be so much easier now. The things I never used to think about, such as how I sit at work, or driving, will be easier and better than before, and before I know it everything will become routine again. Now that the expander is out I won't be as tired from being in pain all the time, and I'll be able to go out to busy restaurants and bars without worrying about someone bumping into me. I'll sneeze without having muscle spasms. Running errands after work instead of rushing home because I'm in so much pain. These teensy things, which seem trivial to most, are such an important part of quality of life. They should never be overlooked. The ability to live life without constant pain and discomfort is something we should NEVER take for granted. Living six months with the expander taught me that. And now that it's out of my body, I appreciate, more and more, how blessed I am, to be able to move freely. It's such freedom. And it's also such a breath of fresh air, of relief. Knowing I'll have my life back. With that being said, here are some pictures from today (me voting!) and from the past few weeks.

{I voted!}

{My Essie collection}

{A bear my aunt, uncle and cousins sent me after my surgery. He's sat with me on the couch every day this past week. He's never complained once, not even when I watch Veronica's Closet on DVR.}