Finding Chemo

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Who goes into their first round of chemotherapy with a brilliant sense of naivety?

This girl!

I had my first round of AC last Thursday. Enough people had told me what to expect during my first visit, but I don’t think you can be adequately prepared for that regardless of how much information you have or how much research you do. I think Justin and I had assumed we’d be there for hours, giving us enough time to finish binge-watching a show on Netflix as poison dripped slowly into my heart. We were very wrong (about the Netflix part).

When we arrived, we met with my oncologist to discuss moving forward with treatment and ask any final questions. We are both in love with Dr. Larson. She has a natural way of putting two very strange and morbid people at ease in a situation where they absolutely shouldn’t be. We were then moved to a private treatment room, which was quite cozy, and met all of the nurses who would be administering the chemotherapy. My main nurse, bless her heart, asked me how I was emotionally coping with beginning treatment.

Emotions? Me? Hahahaha.

But for real though, I was overwhelmed. Not only was I there to begin poisoning my body to make it better, but I was being thrust into early menopause. I received an injection (with a disgustingly large needle) to make my ovaries hibernate, with the hopes that my ovarian function would return after I finished chemo. No promises, though. I was given six pills to swallow, and at least five prescriptions to fill on my way home. And I had to watch a video that encouraged me to “still have fun” while in treatment. Right. Okay, got it. Have fun!

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Receiving chemo is a pretty interesting process, if nothing else. The first drug, adriamycin (aka the red devil), is a brilliant red and is pumped into your port slowly. It turns your pee orange! Cytoxan follows that and isn’t nearly as exciting. Really, if it’s not going to turn my urine a different color, I’m not interested. The whole process does take a few hours, but it’s busy and there’s a lot you need to pay attention to. When you’re finished, you are given the option to come back the next day for a shot of Neulasta (a bone marrow stimulant) or go home with a self-administering shot. What is this wizardry, you ask?

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The little pack administers the medicine through a hollow tube 27 hours after it is placed on your skin. Being the five-year old that I am, this wowed me more than I should admit. But it’s so neat! Modern medicine is crazy! I shouldn’t have been that excited about it, as it made me feel like absolute dog shit, but I digress.

Because they pump you full of steroids, you feel like you could run a marathon, and so I felt fine on Thursday. I felt fine on Friday. I was doing pretty well until I tried to sleep that night and I felt my body literally morphing. I could hear my stomach making terrible noises, I could literally feel my joints cracking, and my scalp burst into flames. It was horrific. By the time Justin got up for work, I thought I was dying.

Queue three days of splitting headaches, vomiting, body aches/pains, hot flashes, and crying, as well as horrid constipation. All I could do was lay in the dark and sleep, drink small sips of things, and whine about the indignity of it all.

0/10 would not do again.

Except I have to, fifteen more times. That is horrifying to me, but I somehow have to make peace with it because it’s happening. I don’t know how to be strong and pull through. I don’t know how to act like it isn’t awful. I don’t know how to not feel like an incredible burden to my partner and my coworkers. I just don’t know. I feel like a geriatric lady with my pill box and my medication schedule. Thrush has now become an issue, and my tongue is covered in painful, white sores that make it difficult to eat anything harder or crunchier than a piece of plain bread. My body is falling apart at the seams.

The upside of this situation is that I have finally been forced to shave my head. I could have waited for it to fall out naturally, but my scalp felt like it was on fire, so we had a shaving party. I’ve always wanted to know what I look like bald, but never had the guts to do it (not to mention, the chicken nugget used to tell me I had a gross, lumpy head). But, I have now been able to transform into my desired androgynous form and I. LOVE. IT. Feeling good about my body has never come easy for me and though I try to practice what I preach by loving it and appreciating it for all it does, I still succumb to negative self-talk. Fuck all that though, because I look sickening with a buzz cut. SICK-EN-ING.

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A large piece of me would really like to be an advocate for women who undergo body changes due to diseases/disorders. It’s really empowering to look at yourself in a new light, against the stigma of what a woman “should look/act like”, and come out loving what you see. I want that confidence for every woman. On that note, Obesity and Malaise will soon be featuring guest writers- people who have incredible stories to tell and who want to share them with the blogosphere. Keep your eyeballs peeled for that!

 

 

If you can’t love yourself, how in the hell can you love somebody else?

So I went to Burning Man.

I did That Thing in the Desert.

I did it, I adventured, and now I’m home. But what does that mean?

I don’t know, friends. I had this entire post penned and ready to publish, but I instead kept hemming and hawing over it until I hated it. The whole thing was deleted. It’s gone in part because I loathed the way I couldn’t English up a good description of what I had experienced, but also partly because I don’t want to publicly share what I went through in Black Rock City. It may sound silly, but they are memories that I want only for myself and the people I shared them with. These people who accepted me for me, who built me up, and showed me that I am worth loving- I selfishly want to keep that inside of me.

Except it’s not selfish at all.

My last post (I think) mentioned the temple at Burning Man and how I had (maybe) set it as my intention for going out there. The temple itself is an incredible structure, made for the most delightful burn, and is covered in residents’ personal messages of grief, loss, and pain. I wanted to go there and take all of my anger, resentment, and hurt (plus a wedding dress) to burn into oblivion. It was such a small idea at the time but, by the Friday that I actually got out there, it meant so much more.

Avoiding the temple was easy for the majority of the week. I really didn’t want to go, even though it was my one goal. I think I was mostly scared of the emotions I might be overcome by. It’s enough to have your own shit to plod through, but thousands of other people bearing their heart and soul there? Ooof. That fucking temple could move Ted Bundy to tears, I swear. It wasn’t until I spoke to a camp-mate about watching the sun rise that I finally decided to bite the bullet. This human was incredible- a long-time Burner, a Green Dot Ranger, and all-around genuine person- he made me feel like I had enough strength to follow through with my original intention.

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Falling asleep to the EDM jams of our neighboring camp, Ashram Galactica, I dreamed my last dream about the person I intended to burn from my life experience. At 5 AM I woke up, threw on my wedding dress, some leggings, and the only sweater I packed (silly, silly mistake), and rode out with my grey wizard friend to the temple. I let the structure take me to a spot where I felt comfortable sobbing my little face off. Sitting down, I realized how overwhelmed I was by the intense grief and sadness that openly presented itself on the wooden walls. But the longer I sat, the more I took in and realized that we’re all one when we’re experiencing the lowest lows of our life. We can all understand what loss is- and in that loss, there is community, acceptance, and out-pouring love.

One thing I noticed as I sat there, shivering and debating taking that stupid dress off, was the number of monuments to David Bowie. I mourned the loss of the human who made it okay for me to embrace my weirdness just as much as the next person, but it wasn’t until the temple that I realized what that impact meant. Against a beam was propped a cardboard sign with a photo of Bowie and his iconic quote scrawled in black ink:

I don’t know where I’m going from here, but I promise it won’t be boring.

At that moment…at that sunrise…I had no idea where I was going. What I did know was that once I left behind all my negative feelings, once I let go of hating myself, when I truly just accepted myself for who I am…it didn’t matter where I was going because it was going to be fucking rad. I tied my wedding dress around that column and left, albeit freezing, but with a new head on my shoulders.

Later that day, while this was processing in my mind, I met a woman who had worked tirelessly on the temple build. She had come to our camp to receive some healing and had ended up waiting for a few hours to be seen. I originally sat down to apologize to her for the wait, but we ended up talking and got into a discussion about what our favorite parts of the Burn had been so far. I explained my little temple intention and the story behind it and she met me with an incredible bit of humanity and realness. Paraphrasing her words won’t mean to you, my dear reader, what it meant to me, but she told me that she had built the steeple of the temple. In it, she had placed a home-made banner from her own wedding (which had ended like mine), but that she was the only one who knew it was there. She explained that, while she was building, she knew that she was doing the work for someone. She didn’t know who. She didn’t know why. But she knew that the work she was doing was for someone who needed it. And at that moment, this woman told me that she built that temple for me– I was the person for whom she had intentionally worked hard for, and that I was worth it.

I cannot with the sobs. It was hard to work that day. My little, ice-cold heart had just been shattered into a thousand pieces and crocheted back together with random, yet intentional acceptance. This is why I am grateful for this experience. For every person who told me I was worthy of love. For every person who genuinely affirmed that I was intelligent, pretty, and sarcastic as fuck but still a good person. For every human who gave me a chance, and who let me be the weird me I am. Especially for the person who was willing to call me on my self-deprecating bullshit. Thank you.

Temple burn was a mess for me. I was incredibly emotional, but not in the way I though I would be. I was sad, but I was also elated. Knowing that you’re truly whole no matter what someone else has instilled in you for years is cause for laughter and celebration. I didn’t laugh though, I just leaked out of my face. Seeing that fire take over 70k+ people’s anguish was truly one of the most surreal experiences for me. I was happy and I was thankful.

While we’re on the idea of thankfulness, I want to mention how incredibly thankful I am for the HeebeeGeebees and the people I met through them. Never would I have imagined that there would be a group of individuals who would magically appear in the desert and challenge me to be a better version of myself. You made me want to learn, grow, love (myself), and appreciate others. I truly love you all for what you gave of yourselves during Burning Man and I hope I get to be a part of that for years to come.

For years I’ve watched RuPaul’s Drag Race and attempted to internalize the closing statement. I’ve always failed in that regard- I’m not worthy of love because look at me. But Burning Man gave me the chance to take that phrase and actually apply if to my life. I get it now, friends. If I can’t love myself, how can I love somebody else?

I can’t.

So for now, I just love me.

But I also love the fuck out of you all.

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Because Self-Worth is Fun to Chat About

Buckle up, kids. We’re going on a roller-coaster of shit sandwiches.

And by shit, I mean feels.

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I mentioned in my previous post about my self-worth being basically destroyed. It’s a thing. It happens to people who caretake and who have mental illness and whateverthefuck. It’s a real thing! I wanted to dig deeper into why I feel the way I do currently. I have some fun suspicions and speculations. Do bear with me…

I could start at year one, when I was birthed to a wonderful mother and a shit father. I could start when my mother’s next husband adopted me and things went even further downhill. And I could talk about my harrowing rape/abuse stories regarding dating while I was a teen. But why? All of this made me who I am today. It has strengthened me and given me tools to deal with future-me bullshit.

Well, I thought it did.

I’ve been in some form of therapy since I was thirteen, I think. I do what people tell me to do. I listen to their words and try to internalize them. I hit heavy bags because it’s supposed to make me feel better. I’ve opened up my fucking chakras and balanced my ‘chi’. And yet, here I am, wondering where it all went wrong.

I think everyone who has had a therapy background can tell you that you develop a split personality (this is not medical and is only based upon my experience). Every single day, I have conversations with two different people. I have the Counselor Elspeth:

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I can do all things through Satan that strengthens me blah blah blah. I am beautiful, I am worth it, I am funny, I am all the things. Cool? Cool.

And then I have this Depressed Elspeth:

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It’s quick to remind me how fat, ugly, unintelligent, unworthy of praise/everything I am. It’s way better at its job than the Counselor. Go figure. It’s had more experience.

I know people love me, appreciate me, and cherish me. I do. I love you back- more than you will ever know. But I struggle with loving myself. That’s a hard thing to do, I think. Self-loathing is instilled early and is difficult to break.

It doesn’t help that I spent four years with a man who constantly doubted me. Who told me I looked like a “lesbian” when I cut my hair, and built a relationship with me based on lies. Who never trusted me to do anything other than spend my savings on bringing him here. The negativity was real and palpable, regardless of what I did to improve it. Date nights? I asked. Therapy? I asked. Opening up our relationship? I tried.

It solidifies who I see in the mirror every morning. I hate who I am, but I won’t stop because this self-loathing is ingrained. Because I am needed at work, I show up. Because it would be wrong to leave this life because people depend on me, I show up. Because I am supposed to be a loving and caring wife, I showed up. I was there when my partner wasn’t. I will always be there when my partners aren’t.

Relationships throw me the fuck off. I’m a very open person normally, but recently, I’ve not been able to open up to anyone. I know why that is- I cannot form meaningful relationships with humans that I want to hold my trust. Friends are fine. Casuals are fine. I don’t give my actual love out to anyone, though, unless they’re worth it. And that has been two people. And they have both destroyed my heart. After having spent my Friday night sobbing on the floor of First Ave (something I DO NOT recommend) when someone said something nice to me, I feel like I have some work to do, even though I would rather squash those feels deep down inside me.

I can give a lot, but I’m not perfect. I know I’m not. I know I can be unfair, terrible to deal with, and crotchety…I know I’m human.

Thus, I pretend to be okay. I keep things inside myself because I know I’m lucky and I’m loved. And I am technically okay. But I hurt. And I have zero self-worth. What a shock.