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.

Scene: the grocery store.

Elspeth: stands in the middle of an aisle with dead eyes, wondering why she’s still in the produce section while uneaten pizza exists in the world.

Old Man: pushes cart. Abruptly stops and stares at Elspeth, makes things uncomfortable.

Elspeth: seconds away from giving Old Man a dirty look, chooses to stand awkwardly instead. Prays he does not try to communicate.

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Old Man: I really like your head shaved off like that!

You.

What?

Let’s break this down quickly. You, a presumably kind and harmless old man with an opinion, like my head shaved off like that. You were so strongly compelled by my fuzzy scalp that you just HAD to stop and tell me that YOU liked it. On one hand, I’m proud of you for wanting to say something nice to a random cancer-lady you don’t know. On the other hand, I’m DAMN PROUD of you for giving me a compliment in the most serial-killery fashion you could. On a list of people who could shave my head completely off with my blessing, you would fall in the top 10.

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I was going to be mad, but if you’ve got to insert your unwanted opinions into my life, it’s best to do it the Dahmer way. It certainly softens the blow.

PS: a huge thank you to everyone who has been supportive of my new hairstyle! Never would I have imagined that the phrase “you have such a nice skull”  would mean so much to me. ❤

 

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!

 

 

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.