Boooo Cancer. You suck!

Up down (up down up down up down)

I just got off the phone with the very nice lady at Sloan-Kettering. I called her because I wanted to know what would happen if say… I went in for a consultation with this surgeon on Wednesday and maybe we didn’t click. Would I be able to speak to another surgeon instead? It seemed like the answer was no. This reduced me to tears in a matter of seconds. My frustration with this situation is always bubbling just below the surface and so any minor setback feels like the worst thing on earth. Like the universe is conspiring against me, which, I might add, I am not certain it is not. 

I honestly have no idea what the moral of the story was. Something about how if I felt that I was not going to gel with this guy then she could cancel my consultation with me and schedule me with somebody else who I thought I might better connect with based on their online bios. The thing is, I need a face to face meeting with someone before I know if we connect or not. I don’t think it’s unreasonable in a situation like this where you have to make such an incredibly difficult decision to want to speak to as many people as it takes to find someone you trust. Someone who you think is on the same page as you. What I also wasn’t understanding is that this guy would be doing the removal, not the reconstruction of my breasts. See, that’s an entirely different surgeon altogether. Once that sank in I asked to have a consultation with a surgeon. I was given the number of one person but decided to just go online, check out the bios (and do a little Googling), and then call the surgeons office myself. 

I found one plastic surgeon on the site who seemed like maybe he will be a good fit. I have no idea. My head is just swimming from all of the questions going through my mind. It’s so awful. I did, however, get a consultation set up with a plastic surgeon as well but that’s two weeks from now. 

I feel like this is such a huge deal that I should talk to EVERY plastic surgeon who works on the team at Sloan-Kettering so that I KNOW I’ve seen everyone and can make a decision that is right for me. I’m scared of just seeing these two people and then feeling like there is somebody out there who might be even more perfect for me to see. That’s not to say that both of these men aren’t reputable in their own rights, but this is my LIFE we’re talking about here. This is the way I will see myself for the rest of my life. It’s my self-confidence, my femininity, my sense of who I am that we’re talking about. Yes, I know that my breasts don’t define me, but I’ll be damned if they don’t make me feel somewhat feminine. I want to make sure that I’m in the best hands possible. 

Oh well. I guess I should be glad that I at least have these two appointments so I can get the ball rolling. I’ll try and focus on that. In all honesty it doesn’t make me feel any better at all. I will always hate having to go through this. I will always hate having to do this. I will always wonder if I really do have to go through this at all and if maybe I could have been one of the lucky ones. 

First step

Today I got a call back from the very nice woman at Sloan-Kettering who helped me yesterday. She put me through to the financial department to make sure I was good to go with Medicaid. Once that was cleared (I’m good to go) we were able to figure out a time when I could go in for a consultation. Turns out there is an opening next Wednesday for me to speak to a surgeon about this whole thing. I have a list of questions that I want to ask. Every time I think of a new one I add it to the list. I’m going to be perfectly honest in that if I do not like the surgeon I speak to I’m going to call back and try and get in with another. That is not to sound pessimistic, but it’s not like I’m talking about switching my hair color here! I’m talking about some MAJOR surgery that is going to affect how I see my self and that I have to live with the rest of my life. So. That being said, I will speak to however many people it takes until I find someone I’m comfortable with, and only then will I start to think about moving forward. I’m also not entirely giving up the idea of seeing if any other surgeons will work with me somehow, it’s just my crap luck that basically nobody good takes Medicaid. Though I have to say, if there was any hospital that I might want to go to for all of this I would think Sloan-Kettering would be a pretty good start. It is a cancer center so I hope I’ll be in good hands. Only a week to go and then I can start getting some answers. 

Baby steps

Perhaps it is no coincidence that after a week or so of clouds the sun came out today. This morning I got a call back from a woman who works in the cancer program which is covered under Medicaid. She informed me that I have the straight Medicaid and that I should be fine with the coverage it provides. What I explained to her is that while I’m grateful to have any coverage at all, I am finding that no surgeon that is a good or reputable surgeon takes Medicaid. End of story. She then informed me that the doctors at Sloan-Kettering do indeed take Medicaid and thus a small sliver of light was shed onto what is a very dark chapter of my life. 

I called Sloan-Kettering and spoke to a very nice woman on the phone who was super helpful and actually managed to make me feel a tiny bit better. Turns out we even share the same birthday which is pretty cool too. All I need to do is fax over all my surgery/pathology/chemo info and she can get me scheduled to come in and speak with a surgeon. So I guess that’s a step in the right direction somehow. It’s going to be a bit of a trek to get to where I’m going but if I could just have more moments like this where it feels like something actually goes my way then things would be a little easier. The whole thing makes me sad but I’m going to try to keep going no matter what. Little steps. Little steps until they become big steps, and then maybe I can stride. 

Bad Morning

I have begun the not-so-fun task of finding out what Medicaid covers in regards to a double mastectomy and reconstruction. I’m a little upset right now, having called the RLC to speak to a financial advisor only to hear that Medicaid will cover the removal of someone’s breasts but not the reconstruction. It almost sounded like the woman on the other end of the phone was smiling or happy as she said this. A little bit of a somber tone in her voice would have been greatly appreciated as I don’t find anything even remotely fun or interesting about the fact that I can have my breasts chopped off but won’t be able to afford to have anything put in their place. I said as much on the phone and was told “well, that’s an expensive surgery”! I’m going to refrain from sarcasm at the moment as quite frankly I just don’t have any energy anymore to think let alone try and find the humor in all of this. 

I called one of the plastic surgery offices that I found online that seemed like a good option and the girl who worked there was infinitely more helpful and kind than the previous woman. She’s going to try and call Medicaid to find out what they can do because naturally nobody good takes it. Go figure. I hate all of this. I hate cancer and I hate having to think about this. Sorry I don’t have anything very nice to say today. Or for the past two weeks, come to think of it. I’m just very tired and I want this all to go away. Maybe later today I’ll feel better. I don’t know. 

Shame. On. YOU.

Ever since the news broke yesterday that Angelina Jolie had undergone an elective double mastectomy and reconstructive surgery the internet has been flipping out. I made the mistake of going to the New York Times page on Facebook and was appalled at what I saw in the comments section beneath the article that Angelina Jolie penned. Whereas I expected to see women united in support for what I assumed could only be perceived as a brave decision, I instead found a vicious outlet for women to attack another woman. For having her breasts removed. So she would not die of cancer. Someone please explain this logic to me. 

The cattiness between women is as old as time. That does not make it any less disgusting, nor does it excuse such vile behavior towards another human being. Why do women hate other women so much? One of the first things I noticed while perusing the comments was a woman who described Angelina’s decision as “fear based” and shameful. This came from a woman!! A WOMAN! What woman in her right mind would ever tell another woman that the decision to chop off her breasts was fear based and that basically she is an idiot for doing so. This woman went on to say that there are other methods besides this “slash and burn” solution that could have been employed. Oh really? Do tell. But first, let me ask you this: have you ever had cancer? Have you ever pulled your hair out of your scalp with your bare hands? Have you ever felt as if someone was scraping a knife against your bones as the chemo you are taking breaks down your bone marrow to a point where you can hardly walk let alone see straight? Just checking. Now, what were you saying? Something about fear? You’re damn right there’s fear involved. Fear of dying is a good place to start. Sure, a person who has a BRCA mutation could play the odds, but if you’ve ever had cancer once you surely do not want to have it again. If you’ve NEVER had cancer before and are told there is an 87% chance that you will get it…. well, I would not condemn anyone (let alone a mother of six) for making what is ONLY a BRAVE decision to move on with her life. 

Tracey Greener Rice chimed in by saying that “if she follows up by having her ovaries and uterus removed she will have essentially gutted herself as a sexual being”. Wow, Tracey. Wow. That’s pretty spectacular. You basically represent everything that is wrong and bad about how society views women. Congratulations. Your small mindedness sets you leaps and bounds above the rest of us ding dongs who were foolish enough to assume that there was more to us that was innately feminine than a pair of boobs and ovaries. Thank you for reaffirming my fear that people actually think like this. And a woman no less. Wow. I just… nope, I can’t even finish my sentence. 

Michelle Chapin Finn, a nurse and cancer survivor (insert my shock here) said that the decision was “drastic” and that cancer “can be caught early and cured”. Really?! There’s a cure for cancer?! Why that’s great news! Thank you well informed nurse. Boy I really wish I had someone like you on my medical team. Someone who calls this a “useless and needless” surgery. You’re a nurse? Really? And a cancer survivor? I’m having trouble putting these two things together in my head because you really just sound like an uninformed, negative, skeptic who clearly is out of her depth of knowledge on this particular subject. And by the way… it can be “caught early”? You do realize that you are implying that then the person would have cancer and that it’s apparently no big deal. We caught my cancer early and let me tell you something: it was a big deal. It sucked. I would never want to go through that again. And knowing I have an 80% likelihood of doing so is not comforting at all. Neither are you.

Sue Kalla remarked (in her infinite wisdom) that “if you have a genetic predisposition to cancer it will just manifest in another place. If you want to prevent cancer consider what you are eating and drinking and make some serious lifestyle changes”. Oh wow. That’s such great advice. Thank you, Sue. Hmm… if only someone had told me that when I had the gene already inside of me and was eating only organic food, cooking my own meals, not drinking, not smoking, doing yoga seven days a week, meditating, and generally living one of the cleanest lives that I was aware of. Maybe I wouldn’t have gotten cancer to begin with. I should probably make some more changes like… what? Listening to you? Nah. Pass. 

And Susie Walkup-Herman wanted to know “are you going to pay for everyone’s elective mastectomy”? Excuse me? How does that even make sense? Why should she have to pay for everyone else’s anything? Do you apply this kind of negativity to every area of your life? Because if you do I feel sorry for you. 

I feel sorry for ALL of these women who have taken what was a courageous decision on the part of Angelina Jolie to come forward and share something incredibly personal and turned it into an opportunity to spread hatred and contempt. I feel sorry for them because they have something worse than cancer. They have hatred in their hearts. And while Angelina Jolie may have removed things from her that make her “less of a woman” to these horrible women, at least her dignity and compassion remain intact. I cannot say the same for these sorry excuses for human beings, let alone women. Shame on you. Shame on you all. Unfortunately there’s no genetic test to see if you are predisposed to being an asshole either. Nor is there a cure for hatred. It’s women like this, women who hate other women, who are truly the ones to pity. They set us back decades in their petty judgements and catty remarks. Shame on you. I could have no boobs, no ovaries, and be bald and I would STILL be more of a woman than you are. Beyond that, I would still be a better human being. I would say grow up but you are all grown women. Therefore I can only shake my head in disbelief and hope that the real women in this world outnumber you, and that you yourself are treated with compassion should the tables ever be turned. Everyone deserves that. Even you. 

To Live or to go on living

I am slowly coming to grips with my situation. That does not mean that I accept it, it just means that I am coming to understand the reality of it. Acceptance may never come, because, quite frankly, who can really “accept” something like this. Acceptance would mean that I have made peace with what it is that I have to do and that would be a lie. I have not. I have, however, started to understand it more. I understand that cancer is terrible. I understand that 4 out of 5 people with this gene get cancer again. I understand that the odds are not in my favor. I understand that I could die.

I’ve heard a lot from people in the last week. It’s been good to get out everything that is swimming around in my  head. I feel that the more I talk about it, the more I slowly begin to find strength. Again, this is not to be mistaken for acceptance. Yet somewhere in the last few days I have felt the faintest of stirrings inside of me which I believe might be strength. I do not like what I have to go through but I might find a way to get through it. 

It is rare that I think “why me” or that something is particularly unfair, but in this instance I feel this is more than unfair. I think I’ve been through enough. I think I’ve had quite enough already. There’s no need to have to go and do all of this on top of everything else, is there? I guess maybe there is. I have to ask myself do I want to live, or do I want to go on living? If I want to live then I can take my chances. I can keep getting my checkups and hope for the best. I can pray that once I’m off the Tamoxifen that will be the end of it, and I’ll be the lucky one who never gets cancer again. But will I be living? If I want to go on living I have to do the unthinkable. I have to make the decision to go in and have both my breasts removed. Then I have to do something I never in a million years would have contemplated (because leaving things that way will not do for me) and have fake breasts for the rest of my life. Then one day I have to take out my ovaries as well. That’s what I have to do if I want to go on living. 

I wrestle with how I will feel about all of this. About how I’ll feel once I’ve had reconstructive surgery. Right now I think I’ll feel fake. I’ll feel like a fake version of myself. I’m not sure how I’ll be able to love myself again. What I mean is, I’m not sure how I’ll ever be able to really look at myself again. The idea of fake breasts makes me incredibly uncomfortable. How will I come to terms with what has happened? Will I ever get my confidence back again once it has been tested in such a way. And yeah, yeah… I know that my breasts do not define me, but they are attached to me. They’re a part of me. Have been for a very long time. There is some deep psychological and emotional scarring that is going to happen as a result of this whether my boobs make me who I am or not (which they do not). I feel like I’ll be self conscious all the time because of this. LIke I’ll always think I’m just not the same person anymore. I guess I won’t be, will I? 

I don’t know why I have to go through this. It’s pointless to even think about. I don’t know what it all means yet. Maybe I never will. I just know this is a heck of a choice to have to make. And I know I don’t want to die. 

…

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. 

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.