Me.

I realized today that I am a badly broken and damaged individual, and it has nothing to do with cancer. I haven’t seen that as clearly as I have today.

It is not something I want to be.

I’m going to take steps to fix that and right my wrongs. It is going to take time, though, and as an action-oriented individual, this pains me. I want it to be fixed now. I want to be proactive now. I want that serenity…now.

But that’s not the way mending broken things works. It takes time, it takes (considerable) effort, and it takes courage (not something I have a lot of it, it would seem).

I had another realization this morning, shortly after making a stupid mistake (and probably a harmful one), while listening to an Al-Anon speaker. The realization is that I’ve been searching for validation my whole adult life. I grew up without it, things happened, and the lack of validation piled up like a mountain. And if you know me, you know I don’t like climbing, or even being outside. That mountain seemed insurmountable and was likely too much for me to bear, so I sought that in relationships. I wanted someone to tell me that I was lovable, that I was worthy, and that I was truly okay. I wanted them to shoulder that burden because I was too exhausted and mentally incapable of doing it myself.

Gods. That’s a lot.

I don’t understand yet why it’s not enough to hear myself say those words “you are kind, you are intelligent, you are beautiful”, but it’s not. I want to know why, and I am going to work on that. Part of me believes it, but part of me is not enough. All of me needs to take that on and shoulder that weight so that it’s never placed on someone else. That is unfair. I see that. All of my problems are my own and only I am responsible for fixing them. I hope that, over time, I can learn to take only the responsibility that is mine, because that’s the only thing I can do. I want to figure out who I am, as opposed to relying on someone else to do it for me.

Naming emotions and feeling them is difficult for me. But I guess what I feel now is fear. Fear of being alone- the fear of being alone with myself. I’ve done a masterful job of escaping that these last few years, but I can’t run any longer. It looks like it’s going to happen whether I like it or not. Perhaps over time, I will learn to like who I am. So you’re right and I am so very sorry. But this is probably a gift in disguise. I suppose it’s only a gift if I see it that way, and I do.

I fucking hate getting dirty and messy and sweaty, but it’s time to climb this mountain.

You know, I had this realization in the car this morning. My mom and I were sitting in rush hour traffic where 394 turns into 94 (I say this as if any of you know what I’m talking about- it’s a bad habit). We were at a complete stop for nearly five minutes which would normally make me drop a couple of F-bombs and drive my anxiety through the roof, but I was able to just sit there calmly and wait. And in this Twilight Zone-like state, I realized that there is no point in being angry at a situation that I can’t change or have no control over. And then I realized that I’d heard that somewhere before…

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

It’s been made so very clear to me recently that the only thing I can change in my life is myself; I can’t change other people, I can’t change situations, and I can’t change for someone. Really, all I can do is take some time for self-reflection and make changes based on that.

During our final conversation, the ex told me that I needed examine myself and my behavior. Of course, he said this out of anger and to hurt me (congrats buddy, it worked), but he’s not necessarily wrong. I do need to take a hard look at myself and process some of the things that have happened in my life that have shaped who I am today. I’ve been working on it in therapy and thought I was making some progress. Part of me wants to laugh and say “obviously, it wasn’t enough lol”, but I know that’s wrong because again, we can only change (for) ourselves. I hope my insurance pays my therapist really well because boy does she have her work cut out for her this Saturday.

I think one of my biggest flaws is my insistence on putting others before myself. I don’t mean in that martyr/St. Theresa sense, because I’m definitely not the nicest person in the world, but I do often go out of my way to put other people first and care for their needs before my own. I think we’ve talked about this before…but I see now how that’s really just a coping mechanism to help me avoid dealing with my own shit. It’s much easier to throw myself into a person, to get completely lost in them, than it is to address how I might be feeling, or what my wants and needs are. I also have a strong inability to identify my own wants and needs. My guess is that I’m incapable of it because I don’t feel validated. This was a new one for me- my therapist brought it up in the context of my relationship with my mother. She asked something (I don’t remember what), but I said something and then back-pedaled because I felt guilty. She then asked me the same question, but about myself- if I felt validated by myself. I burst into tears because, no, I can’t give myself validation. It was such an odd response for my body, but I guess that’s like…having feelings or some shit. Gross.

Along with that comes my poor communication skills:

  • I can’t communicate my wants and needs.
  • I can only communicate via writing.
  • I will sometimes lie to avoid a reaction that I (my brain) perceive to be a threat to my safety.

Allow me to explain with an example. Early on in our relationship, when we were dealing with some friends who treated my partner poorly, I lied about seeing them. I said I was going to the gym, and I did, but it was also to see this friend and spend time with her. I understand now that I should have been up front about that and not worry about the reaction, but I was afraid. I knew it would cause an argument. The funny thing about that is my behavior caused an argument anyway. Silly Elspeth. When we talked about it in therapy, I realized that it stems directly from the abuse I experienced growing up. I mean, it was so bad that I had to hide food, have my friends bring me clothing to change into at school, etc. I grew up thinking that it was okay to hide these things because that’s how I protected myself. Does it make it okay now? No, but at least I can see that.

Another silly behavior I exhibit is the inability to be alone. I think I’m scared of the idea because, you know, I hate myself. Before this gigantic shitshow happened, I really thought it was easier to be partnered with someone, and it was a source of joy for me- I was happy watching them be happy. I am now very excited to be alone af because a) let’s be honest, there’s no way I’m trusting anyone with my heart ever again (lol) and b) because I clearly have a lot of work to do. Also, I can already hear you saying “not all men”, but let’s not. I have a vibrator. So here’s to focusing on me. All the time. All. The. Time.

Okay, that’s all the self-reflection I can handle for now. I need to go cry in the bathroom.

 

PS: If you know where I can buy some courage, let me know. Is there a courage black market?

U-P-D-A-T-E

Hi, friends.

I keep hearing that it’s been awhile since I wrote anything. Is that true? Has it been awhile? I’m sorry.

I think when we last spoke, I was deep in the throes of my final round of Adriamycin/Cytoxan, which is to say that I was being ripped end to end by some poison that I pay professionals to infuse into my bloodstream. The drug made me constantly tired and really ill, but I lost 12 pounds and reached my goal weight (thanks, chemo!), so it wasn’t all garbage! It felt a bit like a “milestone” or something to “celebrate” when I finished those four treatments, and I was almost excited to move on to Taxol- the once weekly drug that my oncologist built up as ‘not that bad‘.

I’m now six rounds of Taxol deep, with another six to complete, and I’m feeling pretty good. By pretty good, I mean I’m not vomiting, I don’t experience nausea, I don’t have to be left alone in a dark room for days on end (a piece of me enjoyed that part), and I’m no longer addicted to potatoes. Soup is not the only thing I can eat! I don’t have to endure Neulasta, which boosts your white blood cell count, but makes you feel like even a sneeze in your general direction is the most painful thing that’s ever happened to you. And I no longer rely on my 29-going-on-78 pill-box to get me through the day which is a real breath of fresh air- if that fresh air is still polluted, but only slightly less so.

The reality is that Taxol has actually not been that bad. Sure, my fingernails look like I’ve been living in a sewer and surviving off the garbage that rats don’t find fit to eat, but I’ll take it. And sure, my eyebrows finally fell out, but that just seemed to add to my sexy alien appearance. I even got cat-called as I walked into the cancer center last week! #blessed (Men are pigs.) But at its worst, Taxol has given me a wicked case of acid reflux and has run me into the ground, physically and emotionally. I didn’t know I could feel so exhausted at 6:30 AM when my alarm is going off…but again, it could be worse! I could have a shitty brain that doesn’t cooperate and intentionally mangles words and phrases, just to really goad the English major in me.

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Actual photo of my brain.

But, I suppose I should be honest and say that my writing has been slacking because I’ve been out enjoying life- something I never thought I’d take pride in typing. There’s been much less time spent dwelling on things recently, and while I think that part of that has to do with the “bitch, you got cancer live ur lyfe” attitude, I also think that I might just be happy.

SHOCK.

HORROR.

I know, I know. I didn’t expect it, either! What sort of demonic entity could drag me away from the safe haven of the Internet that I so dearly love? Could it be that I am just now understanding the concept of immediacy and participation? Because here I am, looking forward to getting up, looking forward to doing things with people, and looking forward to living this crazy life with my chosen humans. Naturally, there are still a ton of things to bitch about, but why do that when I can wake up to Justin and Mini-J: two people as thrilled to be going to the state fair as they are about Halloween? Who would have ever thought I would look forward to something like that? But here we are.

Don’t get me wrong, the irony of a death-invested person just coming to this conclusion is not lost on me. I know I have a lot of work to do once this time in my life is past (and if it passes without my passing??!!). My goal of becoming a mortician and assisting people in their end-of-life care is still very much alive and, as a I wrestle with my own mortality, is much more meaningful. I’ll get there; just not within the timeline that I had originally anticipated. Such is life, no? In the meantime, I’m staving off that pre-30’s meltdown (what’s 30 when you look like you’re 20 but feel like you’re 60?) and growing my hair out.

 

A special thank-you to everyone who sent me kind emails and bath bombs. You’re the bomb. Literally.

What they don’t tell you about having cancer.

Regardless of what disease you’ve just been diagnosed with, you’ve probably been given a metric fuckton of information about it. You’ve probably been scheduled to see multiple providers without regard to your actual time constraints. You’ve probably been told a whole host of things about stuff n’ things (facts, statistics, data, opinions, culturally ingrained bullshit opinions), and you are likely now in information/sensory overload with the immediate threat of stroking out looming over you. The point is that people throw information at you like a wasted frat boy throws darts at a wall.

My preferred method for dealing with provider appointments is to show up, look attentive and, at the first mention of something depressing, stop listening. Thank the gods for people like Justin and my mother who have sat through those appointments with me and listened to the information when I could not. If it weren’t for them, I wouldn’t be an active participant in my own treatment. Listen, when you start talking about freezing eggs and the millions of dollars it costs, expect to get traded in for the finer parts of my brain, such as Do You Think I Made the Right Decision at Breakfast? and Imagine What Would Have Happened If I had Done XYZ Seven Years Ago.

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But between shoving pink accouterments in your face and telling you that you should probably consider letting a plastic surgeon make bank off your acute despair, people forget to tell you important things, like how your life might change, or how you might want to consider mental health support immediately. Granted, I can only speak to this from the lens of breast cancer, but I have an inkling that it’s a feeling shared by many people who find their lives upturned overnight by the phrase “I’m sorry, but it’s….”.

So here’s a very incomplete and rambling list of things I’ve learned about living with a disease (that no one else mentioned).

  1. You may think you are strong and can see things through to the end without the thin veneer of bravery shattering into a thousand different pieces, but you are probably wrong. And that is okay.
  2. Your friends are going to turn it the fuck out. Their awesomeness has always been known, but it will be amplified by the threat of non-existence, and you will want to hug them that much harder when you see them. Don’t break their neck.
  3. Not all of your friends will want to stay your friends. This isn’t exactly specific to a post-whatever diagnosis, but if it happens while you’re in treatment, it’s going to sting like nothing you could imagine. George RR Martin couldn’t craft a better betrayal.
  4. You’re going to contemplate your mortality in ways you didn’t think possible. What would life be without the tangy bite of a good Gorgonzola?
  5. Decisions you were convinced were the right ones to make will vacillate between “greatest idea ever I love it so me” to “jesus christ what have I done this is all wrong” in a matter of minutes. In my case, once I’ve seen a nice pair of breasts on a Netflix show.
  6. You’re going to spend a lot of time wondering why your partner is with you when they could be with someone else who doesn’t share a temporary zip code with the cancer center. And who has hair. And who is in control of their life. And shits on a regular schedule. And who probably knows how to do winged eyeliner or some other magical craft.
  7. Your partner is going to surprise you with their kindness and understanding, and you will chastise yourself for pondering item 6.
  8. Potatoes are Satan’s gift to the world. Potato soup, mashed potatoes, lightly fried potatoes, raw potatoes, Mr. Potato Head. All amazing.
  9. You will have dreams of a day when you could brush your teeth without your gums bleeding, take a poop without bleeding, breathe…without bleeding. But then you’ll wake up.
  10. You’ll probably feel crazy and second-guess everything you think and do. It’s a real Gollum/Smeagol situation, if I’m honest. This is where it would have been helpful to have that mental health support in place.
  11. Lush bath bombs are made by kitten angels and sent to earth for your enjoyment and relaxation.
  12. BATHS. ARE. GREAT.
  13. Trying to take care of everything like you used to is a real stupid idea. Actually, this one they kind of hint at (plus, it helps to have family members who echo this sentiment), but you don’t listen because you’re so strong and can handle it.
  14. Glitter can, in fact, make things more tolerable.
  15. You will break. You will have moments of wishing that you didn’t have to see this through. End of that thought.
  16. BUT! You will get through it because, even if you don’t believe in yourself, hundreds of other people do. And you show up for the people you love, because they’re worth it.
  17. And maybe so are you.

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Edit: I forgot one! No one mentioned that the chemically-induced menopause was going to make me cry all the time. It’s onions. ONIONS.

In which we discuss feelings, doormats, and ways to be kind.

I’m going to state, note: not apologize, that this post is fueled by a lot of emotions and anxiety. If you have a problem with something, you know where the red x is.

These last few months have been pretty stressful. And when I say ‘stressful’, I mean fucking insane, ridiculous, demanding, brutal, unkind, etc. It’s been a real sidewinder of shit, but in a way, I’m grateful for it. Cancer has forced me to slow down and examine my life in a way I probably wouldn’t have been capable of otherwise. It has shown me incredible kindnesses through my community of friends and family, and given me a chance to connect with people I might not have before. It has forced me to work on my relationship with my partner, as well as my friends, and really value them for what they bring to my life. So for that, I am grateful. And because of that, I’m doing some self-work, y’all!

Please allow me to be the first person to acknowledge that I have a tendency to be a doormat. I am the type of person who goes out of my way to accommodate people who I consider worth it and, often, people who continually prove they don’t deserve it. I do it because I was raised to treat most humans with respect and kindness, and I stick to that as a general rule. Sure, I set some boundaries, but it takes a lot of abuse and pushing to get me there.

Even my work knows my questionable personality traits!

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Sometimes, I think being a caregiver and being a doormat coincide. My ultimate desire is that everyone be happy and cared for and this often comes at price- to myself and my needs, to my partner and his needs, to my family and their needs. Again, I know that this has played a part in the end of some of my relationships, but it’s hard to break the cycle when it’s something you’ve been doing for so long. It’s hard to say ‘no’ to people when you only want to say yes, because helping people out is a fulfilling feeling. But it’s difficult to set appropriate boundaries with people when you’re used to bending over backwards to please them. And it’s quite difficult to understand why people would not afford you the same kindness.

The clear unwillingness to not be kind to someone, even if you don’t “understand them”, is baffling to me. And no, I don’t mean #peaceloveandhappiness #truth #powerofpositivity Instagram bullshit kindness that isn’t followed up with an action. I mean put your biases aside, slide into your human suit, and offer people the same treatment that they have extended to you. It’s not hard! I do it all the time, and I do it because I believe that people deserve respect, until they demonstrate to you that they don’t. And, as I stated before, I have previously CONTINUED to show them kindness, well after they’ve shown me their true colors.

I guess I believe that, even if we don’t necessarily see eye to eye on something, or we don’t get along for whatever reason, that you are still deserving of respect as a person and I am willing to help you. I believe that people can coexist in this world peacefully even if they don’t like each other. For example, you might have voted for someone whose policies I don’t agree with, but I’m not going to treat you poorly because of that choice. Someone might engage in activities that I would not choose to partake in, but that doesn’t mean I’m going to think less of them for it. The world isn’t black and white like that, at least for me.

Recently, I started going to therapy. I think the cancer has pushed me to the point of serious self-evaluation; a place where I need to decide what/who is important to me and put in serious work to realize my life goals and dreams. So, through all this work, I have come to conclusion that it is time to start enforcing boundaries. Saying ‘no’ is going to be big area of growth, as well as learning how to divide my time appropriately. I want to  learn how to accurately express my feelings, even if it feels uncomfortable and weird, and then learn how to stand firm in them when they are inevitably challenged.

So a shout out to all those people who have abused my kindness. The deliberate avoidance of eye contact when I’ve gone out of my way to do something for you or your family member? Bye. The honest well-wishes to you and your family members in their times of need, when you’ve referred to my illness as a “FUN ADVENTURE” (yes, this really happened). Bye. Tolerating snide remarks because I’m too nice (doormat)to call you out in public? Bye. Expressing my feelings in what I assume is a safe space, only to have them used against me in the workplace? Bye. Holding all of this in and letting it fester is just hurting my chances of healing. So blessed be the fruit, fuckers. It’s a new Elspeth.

BUT!

I would also like to sincerely thank everyone who has stuck with me through this last year and a half. The people who have turned out to show their support and love have floored me. The people who continue to read this word salad and send me thoughtful messages- it means more to me than you know. I know I’ve said it before, but I never thought that I would, or could, make a difference to someone just by writing. Thank you for being there for me, for being part of my community, and for being the amazing people you are. My sock drawer thanks you, as well. I value you, I appreciate you, and I love you! I have no idea how to ever repay the kindness, but I will do my best.


PS: If this seems disjointed, or not like my regular writing, I apologize. I am apparently suffering from “chemo brain”, which is a real thing verified by my oncologist (!!!), and it has really been taking a toll on the way I express myself, as well as my memory. Bear with me, as all I can do is continue to push through it. October can’t come soon enough. 

Cheese, BRCA 1 & 2, and #healthiswealth.

If I had a dollar for every time someone said to me “oh, so you’re doing the Angelina Jolie thing?”, I would have ten dollars. Maybe. And sure, in the sense that we both had bilateral mastectomies, they would be right. But there is quite a difference between Tomb Raider and I- she carries a BRCA 1 mutation and I don’t. Because she has a gene mutation, she was told that she had about an 87% chance of developing breast cancer. Mrs. Smith opted to pursue something call a prophylactic mastectomy (sometimes referred to as a preventative mastectomy), which seems to have been a wonderful option. She also opted for reconstruction, but I don’t have time to blather about that.

When I was diagnosed, a myriad of appointments were scheduled for me, and speaking to a genetic counselor was one of the first things I did. After watching my mom survive breast cancer, and then watching my grandmother do it eleven years later, I figured I should probably get some testing done. When I brought it up to my GP, she stated that I could do it but that I “was young and it was expensive”. Both are true, of course. My mother had just done her own testing, only for BRCA 1 & 2, which both came back clean (sans mutation), and my grandmother was old enough that testing wasn’t really seen as a helpful option.

So my genetic counselor and I mapped out my family (to the best of our ability because I don’t know shit about my bio-dad’s family) and opted to test the eight major genes that are considered high risk for cancer development. I figured that shit would come back with mutations across the board because…duh…it’s me. The test results took forever to be analyzed and it took me even longer to get in for the results, so in that time I had already had my surgery, had my drains removed (for the first time), etc. Justin and I both went into the appointment with trepidation, both of us assuming that things were going to be terrible- we wouldn’t be able to have children because I would just pass on a bunch of shitty shit to them…

Lo, and behold!

Not a single mutation. Nothing that explained why my body wanted to murder me slowly. The mix of disbelief and surprise was fleeting when reminded of the actual statistics of breast cancer. So I am not genetically mutated, but I still have cancer. And my mom isn’t genetically mutated, but she still had cancer. Granted, these tests aren’t 100% guaranteed, but come on, science and shit- they’re right. We must just be those fluke humans that develop cancer due to stress. I think that’s why it’s important to tell my story. So many people (read: women) have said to me “but you’re so young and healthy!”. First off- thank you. I am young and I am healthy. And then they follow that up with “I should get checked out”, to which I reply emphatically “YES, YOU SHOULD!”.

Here’s the thing: I AM young and I AM healthy. Sure, I smoked for five years. Yes, I ate meat. Yes, I did drugs. Yes, I engaged in risky behaviors because that’s just the natural course of life for a lot of young women in America. But I am a vegetarian, I engage in regular physical activity, and I live my life as exuberantly and as safely as I can. That “but you’re so healthy” is a real double-edged sword for me. I often feel like women are subconsciously judged for their life choices when they’re diagnosed. I certainly have felt that. But I also get the sense of disbelief that this could happen to a young woman. So really, dial it back, world. For those of us who don’t have a gene mutation, there is no cause and there is no cure.

Sure, sure. I could go vegan. I could go sugar-free. I could do a lot of things that I’m not doing to help/prevent/kill my joy. The beloved and I have talked about going sugar-free, but it sounds like a lot of work and we’re already incredibly stressed and anxious as it is. My mother reminds me about giving up dairy products because of my diagnosis. There is estrogen in cheese, she says. I will lower my risk of recurrence, she says. But you will pry this Brie from my cold, dead hands!

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This brings me to the #healthiswealth portion of my rant. Guess what? No, it fucking isn’t. It doesn’t matter how many kale and avocado shakes you make, your chances of getting cancer are still the same. You can buy one of those horrid Juicero things and squeeze your sustenance out of a plastic garbage bag for $400 a day and still get cancer. Bad things happen to good people, good things happen to bad people, diseases happen to young people, and evil people live forever. My point is enjoy life responsibly, be aware of your body, and do your research.

Women don’t do anything to deserve breast cancer, but it happens.

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Update time!

My drains were removed on Monday due to them trying to physically escape from my chest cavity. Who knew that my body wouldn’t love foreign objects sewn into it?! This means that I am now cleared for all of the prerequisites for chemotherapy, and my port placement surgery is scheduled for this coming week. Chemo commences on June 1st and I will have more updates on that treatment soon. It’s a bit to digest at the moment, but isn’t all of life?

Bags of Blood

Before I start getting all serious n’ shit, I want to tell you a funny story.

This past Wednesday, I went in for my post-op check-in with my surgeon. I was all excited, thinking I might get to have one of my drains taken out. The right one (mind you, this was the breast that was totally healthy) had been coming in under 30 ml’s of fluid for about 24 hours, and I was dying for a bit of relief. My surgeon, a self-identified hobbit and all around amazing guy, let his PA take my right drain out. The removal process felt a bit like a hard, thin snake being slowly yanked from my chest. It was awesome. I was pleased with this progress and went about my day.

That evening, as I was moving around in my nest of blankets and pillows, I noticed a sloshing noise coming from my right side. That’s right. Sloshing. As in a bunch of fluid was rolling around in a big, empty cavity in my chest. “It must be left-over lymphatic fluid”, I thought to myself. That area of my chest grew bigger and bigger, as if my body was trying regenerate a tit like a lizard does when it loses its tail. I consulted the Interwebs to see what I should do before I lost my shit and called the doctor. I tried heat. I tried compression. I slept in a sports bra, and woke up with a huge bruise on my shoulder (MY SHOULDER).

So, I called the nurse. She told me to wait. I waited. It got bigger. I called her again. She told me to try heat and to roll the fluid out the hole that the drain had been in. Gods bless Justin- he tried. So I waited another night, but the fluid pocket/boob grew even more. I was fed the fuck up at this point, so I called her again. She told me to come in at 12:45 pm and they would squeeze me in.

Look, I know you’re all thinking ‘omg lady, just deal with it that shit will be absorbed back into your body through your lymph nodes lol that’s how bodies work you should be a seasoned pro at dealing with weird body shit by now’ but no. This was my line. Cut off my tits? SURE. Poke me with a ton of needles in all of my semi-working veins? GO FOR IT. Fill my gross skin flap with fluid? HELL NO I’VE HAD ENOUGH GET IT OUT.  And get it out they did, but not without some pomp and circumstance. What would this blog be without a little bit of that?

……………..

Five of us are piled into this tiny office, the surgeon, the PA, the nurse, me, and Justin. I’ll skip a few details and get to the exciting part of the story when they try to aspirated my fake water boob with a giant needle and are unsuccessful. Why? Because my chest is filled with blood, which must have happened when they pulled my drain (a ruptured blood vessel or something), and my surgeon then decides to just squeeze me like a fucking lemon into a mound of gauze. Blood is everywhere, I get squeezed until I’m dry but am then promised that it will fill again and the juicing pleasure will be all theirs, as early as next week.

As I write this, with my chest and arm muscles moving viciously to bang the keyboard on my iPAD, I can hear the blood squelching above my ace wrap. Now that I know that my chest cavity is home to internal bleeding, I feel so much more at home. Calm, cool, and collected.

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AND NOW…THE SERIOUS.

It’s with that calm, cool, collected zen yoga peaceloveacceptance shit that I now take issue. I cannot even right now. I know that I seem strong and put-together for what is happening to me. People remind me of that constantly, and are so kind to do so. But I don’t feel strong all of the time. I still succumb to that split brain thing that has plagued me for so long.

I’m amazing no matter what my body looks like.

Sure, except your body looks like a fucking train hit it and is reversing just for good measure.

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I’m a strong, independent woman who is being honest and sharing what life with this disease is like.

You sound like you’re whining.

You could be a voice for young women going through this in the future, etc etc. You are telling people what a female body can look like and still be sexy.

Yeah, but my body doesn’t fucking feel like my own right now and everything feels terrible, so thank you, but no.

And isn’t that the shit of it? I want to be a strong role model for women who are faced with a decision such as mine, but right now, I don’t feel strong. I don’t feel like I have control over my body. I don’t feel like this even IS my body right now.

On Tuesday, my oncologist told me that I would be starting chemotherapy as early as mid-May. Due to the unexpected appearance of cancer in my lymph node, it was no longer just a precaution. As soon as my second drain is out, I will go in to have a port installed and then I can power all of Steve Jobs’ shitty electro…I mean absorb a bunch of poison much more easily than I could intravenously, for about five months. I almost linked the regimen I will be following, but that can come at a later date.

My point is that I am not in control of my body right now. Nothing about what is happening to me is within my control, and that is undoubtedly terrifying. I am a person who tries to maintain her body, who enjoys using her body, and is apparently quite bereft without it. I am grappling with learning this new breast-less body, a body without eight lymph nodes, and a body in which I can now see the tendon that connects my chest muscles to my arm. It’s sick. It does not feel normal. And as much as I love it and was ready for this change, it is still unsettling.

I will lose my hair. This hair, that I have worked so stupidly hard for, that has helped me define myself in a lot of ways; I will lose it, and I will lose a bit of that identity. I will lose eyelashes, eyebrows, and leg hair–and in that, I will lose my control. This will not be my body. It is not the one I have chosen. It is not the one that I want. All of this hurts, and it stings true when my chest fills with blood and I am uncomfortable and hate everything. I can’t even do aerial or acro right now; all I can do is use my hobbit lower body. That’s no fun.

But I am not alone, thank the gods. My mother did this before me, and my friends’ mothers have done it. I am connected with a multitude of women who experience that same pain as I am feeling on a daily basis. So I can feel it, yes. I can slip into my second brain for a bit. And it can be overpowering and intoxicating, but my Tami Taylor brain overrides it and reminds me that though I am but little, I am fierce.