Hi hello yes hello

Someone (who is not my mother) recently reminded me that I have not written anything in a long time. And it’s true, I haven’t. It’s not for lack of having things to write about, but more that I am overwhelmed by the changes happening in my life. I have found it difficult to form a cohesive narrative to bring to you, dear reader. But I will try, and I will hate every minute of it because it’s not perfect.

First, just to get this out of the way, let me talk a bit about health updates. I decided to move forward with radiation. I had been back and forth and, really, had thought I was 100% decided on foregoing it. I was tired. I was not sure it mattered. I was certain I would get cancer again. Blah blah blah. But then one of my coworkers said something to me that really hit me hard. We had recently learned that we were both a part of a 12 step program (more about this in a minute), and she said “it’s like trying to convince an addict to seek help- they won’t do it until they know it’s the right thing to do for themselves”. And it clicked. I knew that I needed to seek that help because it was right for me. I want to do the most that I can do to be healthy for me. And so I asked my supervisor about scheduling it, fully expecting to be fired, but she agreed! This was my first lesson in learning to be assertive with my needs and wants- and it worked out! So, I’m doing the radiation dance. I drive 20 minutes to a stupid hospital and lay on a stupid table and kill myself to make myself better. It’s a real mind-fuck of a situation.

Let’s see…what else? My hair is growing back. My eyebrows are making a valiant effort. My eyelashes fell out a few weeks ago, but they also seem like they’re growing back. I had my port removed, which was a fabulous early birthday present. I got to watch the surgery! If you’ve never watched surgery performed on your own body…are you even living? This. Thing. Came. Out. Of. My. Body.

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And I got to keep it!

So, aside from the gross body crap, what has been happening? It’s hard to explain, I think. The last time I wrote, I wrote to you from my lowest low. I literally hit my lowest low, grabbed a shovel, and started digging even deeper. Who does that?

Me!

I do!

I do, because codependency is a motherfucker, and those of us that suffer from that unfortunate personality trait will kill themselves and anything around them before they realize that they are insane. I feel like I should change the title of my blog to Obesity and Malaise (and Codependency!) because that’s the real issue here. It’s amusing to me because I could never see it. I always thought ‘that word describes my mom and sister’s relationship’, not realizing that I’ve displayed that trait in every single serious relationship I’ve ever been in. Who am I to criticize?!

So I found Al-Anon. Actually, my ex found Al-Anon for me and then snuck a Big Book into the things he packed for me. When we were together, I had wanted to go to a meeting. I wanted to go so that I could “understand him better” or know “more ways to support him”. When I walked into my first meeting, I sobbed. I spent the majority of a month sobbing, but this was different. I felt this feeling (eww, gross) that I was doing something for myself. That I was there for myself. That I deserved to be there and to be happy, and it seemed like this program, and these people, had a pretty good idea of how to achieve that. Part of what I’ve learned is that this is taking care of yourself, not other people.

And so here I am. I’m working my twelve steps. I am being honest. I am being open. And guess what? It feels fucking horrendous. That forth step- the one where you lay out all your faults and all your transgressions? It’s awful. Seeing my part in why I’m so perpetually unhappy and so unfulfilled is AWFUL.

But it’s also liberating.

Because I have the option to be different. I can choose to be a better person. I can learn from my mistakes, now that I see them as such. I have that freedom.

And really, that’s what this is all about. I’m finding freedom in being myself. I’m finally being myself. It’s a real ‘take me or leave me this is who I am la la la la’ situation.

So take me or leave me.

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. 

No longer floating in the stratosphere of stupid (and other updates).

Remember all that chest bleeding that was going on last time we spoke?

Well.

It didn’t go away. In fact, it got worse. I had to see my surgeon again to have him drain it, which meant being juiced while having my left drain removed simultaneously. Neither one felt particularly pleasant, in case you were wondering. We all hoped that, with the compression of an ace bandage and pressure to the area, the bleeding would stop and the chest flap would adhere to my muscle. In typical Elspeth fashion, this did not happen, and my surgeon scheduled a “right mastectomy exploration” surgery. Exploring, what fun!

On Tuesday morning, I went in for surgery and came out with no explanation for the bleeding, plus two new drains. As disheartening as it is, I am hopeful that the extra drain time will help me heal enough so that I may get on with treatment. In the meantime, I’m collecting photos of the nasty (beautiful) things my body produces so that, at some point in the future, I can create a photo collage and make my big break as a modern artist. El oh el.

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Why, yes, those are Larry David leggings! I wore them to the hospital for good luck. All of my nurses loved them, even though most of them thought they were Bernie Sanders. Speaking of nurses- it is Nurse Appreciation Week! Have you profusely thanked all of the nurses in your life? If not, please take the time to do so. I have been incredibly blessed by the excellent care that the nurses of Methodist Hospital have provided for me in the last two months. Without them, I would still be peeing purple and trying to use WebMD to cure my blood balloon boob.

All of this does put off starting the chemotherapy process, though. I need to heal and have these two saddlebags removed before I can have my port placed. It also means that I am doing well enough to start back at work, which I was less than thrilled about. I’ve really enjoyed having time to write, spend time with Justin and my mom, and focus on getting better, as opposed to stressing the fuck out over whether or not we should be purchasing cups for the med office. If I had it my way, truly my way, we would pack up and move out to LA where we could play in the sun all day and I could make my break into the green burial scene. Home viewings! Natural burial! New age death positivity! Woo! I’d even settle to stay in MN and work from home as a tortured writer figure… But since that isn’t happening, I’m back to an 8-4 routine. At least I have good health insurance and some wonderful coworkers!

The last update I have for now is a very exciting one (at least to me)! If you’ve known me at any point during the last year and a half, you know that I’ve been desperately trying to get divorced from an anthropomorphic chicken nugget, and that it hasn’t been going well. But no longer! The final nail has been hammered into the coffin and I’ll be free sometime in June or early July. Hallelujah, hallelujah, thank the dark lords! For months, my attorney had been proposing fair and equitable settlements to him and his counsel, and they kept refusing them, all the while making terrible comments about me and throwing around unfounded accusations. It all came to a head when we had to sit down for a third party-mediated FENE, which is basically financial uncoupling. I won’t go into details, but I will say that I held my ground and walked away satisfied with the outcome. Sometimes things do go my way.

#blessed

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.