Boooo Cancer. You suck!

…

The last two days have been terrible. Obviously Tuesday was bad because I got a heavy dose of reality that, as it turns out, I was just not ready for. Yes, I knew at some point I’d have to take my ovaries out, but the whole breast thing has really thrown me for a loop. I just CAN’T wrap my head around it. 

The way I see it my choices are this: 

Leave my breasts alone. Lucky for me I have to get regular checkups anyhow so they are being closely monitored for any subtle changes all the time. So that’s good. I can take my chances and hope for the best. That’s one scenario. 

The problem with that scenario is that then my mind goes to the next scenario. A bad scenario. It’s one where the cancer comes back and I lose my breasts anyway. Then the cancer that came back is way worse than before and I die. And it’s all my fault because I just couldn’t let go of my breasts because I am a vain person I guess. I know that seems drastic, the whole death scenario, but let’s get real: people do die from this disease. I may not be so lucky if it comes back a second time. If it does, it’s basically all my fault. I  don’t know if I could live with knowing that I could have prevented the worst if only I was braver and could just chop off my breasts and get on with things. I guess I’m not so brave after all. 

Maybe the cancer never comes back. Maybe that was it. Maybe once was enough. Then again with a family history, with having had cancer once already, and with the BRCA2 mutation the odds aren’t exactly in my favor. I feel like I’m playing with my life but part of my life involves wanting to feel like me and to hold on to as much of me as possible. That means my breasts, too. 

I don’t want to do it. I just don’t. I don’t want to. I don’t know what to do. Yesterday I didn’t even leave my apartment. I know, I know… I’m sure things will start to work themselves out. Right now I just feel stuck. I feel like I’m supposed to be making a decision immediately but every path I look down ends somewhere I don’t want to be, and that’s me without my real breasts. I hate it. I hate even thinking about it. I’m trying to be as brave and strong as I can but I don’t feel that way at all. I’m sure nobody wants to read this. Who wants to read about somebody being so sad and depressed about something? Oh well. I don’t really know what else to say. I just know that this blog has always been my escape. It’s always been my place to process what is going on with me. 

I hate cancer. I just really hate it. 

p.s.

To everyone who has sent me a lovely message lately, I am going to get back to you all. I have been trying to catch up with everything this past week and admittedly got behind on what is most important… you guys!!! Forgive me! 

The Breast of Both Worlds

I have been sent reeling back to the first days of diagnosis. Those days when everything was a blur of information coming at me way too fast. The days when heavy decisions needed to be made. Decisions that I didn’t want to make because they all involved things I didn’t want to be doing. 

Today I went in for a checkup with my oncologist. One of the things I love about her is that she’s straightforward, but not without sympathy for the sometimes impossible wall that cancer can back you up against. We chit chatted about how I’ve been feeling, about the dates of my last myriad of exams… the usual banter to get things moving. Then came the inevitable. The talk I knew we had to have. The one I’ve been hoping to avoid. Except it came with a little surprise. (Doesn’t everything when cancer is involved)? The conversation turned to what I was thinking about doing in regards to my ovaries. The point being that since I have this lovely genetic mutation I am at a much greater risk than the general population for developing ovarian cancer. Now, we can’t say for certain how great the risk really is or if/when it might ever even develop into anything, but neither could way say whether or not I might accidentally kill myself if I was playing Russian Roulette and there was one bullet in the barrel if you catch my drift. We don’t know, but the odds are not in my favor. 

Now, I’ve talked about all of this before. The ovaries issue comes down to kids. Do I want them? I have no idea. That also brings up another issue which is getting pregnant. Pregnancy produces a high level of estrogen in your body and that is what my body loves to turn into cancer. See where I’m going with this? If there is any shred of cancer left in my body after all the treatments I went through the Tamoxifen is keeping it suppressed. Now, should I want to become pregnant I would have to stop taking Tamoxifen. Still with me? That means that if, I repeat IF, there was any cancer there being suppressed I run the risk of it then growing and spreading. Unless…

It’s the unless that I’m not so fond of. You would think that for most people the kids issue would be what they were most focused on. I have admitted before that I’m ambivalent on the matter. That’s okay. That’s me. It’s my life. I’m allowed to feel this way. HOWEVER, if there is any little trace of cancer left in me it would be in my breasts. IF I were to get pregnant the hormones that developed as a result of that would affect my breasts, not my ovaries. Meaning if I were to get cancer again at that time because of the hormones it would most likely be breast cancer. Thanks to my family history, the fact that I’ve already had cancer once (so we know my body is all about producing it), and the lovely BRCA2 mutation I have about an 80% chance of getting cancer again. Nice. 

I told my oncologist that it was hard for me to know what to do about any of this because I feel like it’s all up in the air. In a way it would be easier if somebody said to me oh, you have cancer again and now you must do this and that and immediately. In a way, if I had no choice in the matter I would (obviously) just have to do it. She informed me that should I develop cancer again that I would 100% lose both my breasts. There would be no way around it this time. I asked her what a decent amount of time to decide these things by was. A year? Two years? She said that by the time I’m 35 I should really wrap my head around losing my breasts. That’s in about three months. Happy Birthday to me. 

As with everything related to cancer you usually have a LOT to process in a very short amount of time, the outcome of which is usually not something you would have chosen for yourself no matter what. That’s where I am today. I have no idea what I’m going to do. None. When I asked her about the whole breast situation she said what it really comes down to is what do I love more? My breasts or being alive? And there you have it. You would think that would be a no brainer, wouldn’t you. Well, it’s not. It’s just one more thing I have to think about that I’d really rather not. I could put this off for as long as I want, but I’d be playing with my life a little bit. And this is life, isn’t it? This is life. 

Memories

I’m working on putting together a book based off of my blog. It’s something I meant to do when I finished treatment but then I got wrapped up in that whole script thing and… well, you know the rest! The rest was wonderful. The rest turned something horrible like cancer into art. That might sound a bit dramatic, but it’s not to me. Writing that film was my big “fuck you” (pardon) to cancer. For all it put me through I turned it into something better, something positive, something that will endure. 

Part of me turning the blog into a book involves me going back through the ol’ archives and finding posts that are relevant to things that I want to talk about. Needless to say the last hour or so has been an emotional one. It’s like I re-lived my journey all over again. I started at the beginning and found all of my posts from the first day of the blog up through chemo and beyond. It’s hard to read some of the things that I wrote. What I find strange is that it’s not so much hard to know that I went through them (though it does make me feel a bit strange inside) but that I might go through them again. Reading all of these posts about how I felt after a round of chemo, looking at pictures of me pulling my hair out of my scalp, being in the hospital, injecting myself… it freaks me out a little bit. I wonder what would happen if I had to go through all of this again. I feel like the girl that went through it already is me, but she’s not me. Does that make any sense? It’s hard to explain. I wonder. I wonder if I could face this disease a second time with as much courage and even laughter as I did the first time around. 

What a strange thing to have been through. Sometimes it doesn’t seem real, and yet, here I am staring at a chronicle of my journey through this disease and it’s as real as it can be. I feel disconnected from the world around me as I look at all of this. That’s okay. If there is one lesson I have held onto from when I was going through all the craziness it’s to be alright with where I am in any given moment. To let myself be. So that’s what I’m going to do. I like that it’s hard to look through all of these memories. It should be. Going through it wasn’t easy so I don’t expect looking back on it to be painless. But I’m not looking back. Not entirely. That’s not the way I’m going. I’m going forward. Moving forward doesn’t mean that you never look back. It just means you keep going no matter what. 

The aftermath…

WHEW! What a whirlwind last week was! (And what a lot of “w’s” to start off a post with). I feel like I’m just now coming out of a fog. Right now is a very crucial time. I liken this time to the time when treatment has ended. You’ve been through so much, all compressed into a certain amount of time, usually involving the same people… and then it’s gone. That’s kind of where I’m at today. What? No more screenings? No Q&A?! It’s a little bit sad because last week was one of the most incredible weeks of my life. I never in a million years thought that we would be showing our film on a big screen at the TriBeCa Film Festival no less. In a strange way (don’t laugh) I feel like I’m really a part of New York now. Almost like I belong here a bit more because now I’ve contributed something to the city I love so much. Are you laughing?! 

When treatment ended I was lucky enough to have already started writing the script and as such I had something to focus on. I had a place to pour all of my feelings of confusion, abandonment, fear, and wonder into. Now, granted, I’ve not just finished something like treatment, but the feeling is much the same. Here I am after this big creative outpouring has come full circle and… what? Exactly. And what? Now is the time to keep moving. Keep motivated. Now is the time to hope against hope that somebody saw what I did and might believe in me enough to give me a chance to keep acting. Now is the time to keep writing. To get this darn blog turned into a book already. To finish my next script. To maybe (maybe?) be brave enough to direct it once it’s done. The point is, now is the time to keep moving. It’s very easy to linger in that feeling of sadness of something major being over. It’s easy to kind of sit with those feelings for longer than you should and hold yourself back from moving on, but moving on you must! Or I must! Somebody must…. forgive me, I’ve only just had my morning coffee. 

I’m super proud of what we did. This was a major accomplishment. For some reason I wasn’t letting myself say that before but now I will. TriBeCa was a big deal and we did it. That just means I have to keep doing things now that it’s over. 

Oh, and I kind of missed my follow up appointment with my oncologist somewhere in all of this so that might be the first thing I need to do! Back to real life! 

Dialogue

What an amazing couple of screenings we have had! I’m completely in awe of how many people have turned out and how much support we have received for our little film. It is just truly incredible. Overall, the response has been much more positive than negative. I made the mistake of looking up Lily stuff online and found some not so nice words written about me that I read before bed last night which, I think, might be responsible for the nightmares I had through the night hahaha! Not to worry! There are going to be those who might not like the film, but then hopefully there are those that DO! And THOSE are the people who matter. I think we have had a largely positive response so far which is very encouraging. 

I’m surprised at how I’m just now starting to feel a bit vulnerable for having put my life out there like this. For the most part it’s fine, but I guess when reading the not so awesome things that are out there it makes you think “man, that’s my life! And that’s ME”! But you know what? That’s okay. The most important thing that I wanted to happen has happened: a dialogue has been started. The absolute coolest part of the festival so far has been the incredibly brave people who have come up to me after each screening to share their own story of treatment, and even survival. It seems unanimous that we touched on something good in the film by focusing on just how hard it can be to get back into life after going through something so major. That can be anything! A huge breakup, a death, a disease… anything that changes your life completely, and sometimes overnight. It means the world to me to know that other people who have gone through this are moved by what they see. That means it’s real, and that’s important to me. 

I hope that people who see Lily start to understand a little bit more about just how hard it is to transition out of treatment and into a new life. It’s so amazing to talk to all these brave people who have shared in something so terrible, yet who all, each and every person I’ve spoken with, have a smile on their faces. I’m more and more inspired with every new person I meet. It’s just incredible. 

A big huge thank you to everyone who’s come out so far in support of our film. We are just humbled beyond belief at how supportive everyone has been. It’s a real dream come true. And to cancer, I say this: screw you!!! I kicked your butt you big meany!!! Now get outta here! 

It is Wednesday…

TriBeCa is Saturday. That means it’s two days away. I am going to faint. Please revive me in time for the panel talk on Saturday. Today was not a good day to decide to skip my morning cup of coffee!