What's The Question?

On April 20th, 2015 I was officially diagnosed with Acute Myeloid Leukemia. I began a clinical trial chemotherapy treatment on April 29th, 2015. On June 8th, 2015, I was told I am in remission. The sole purpose of this blog is for me to journal my experiences through the adventures of cancer, chemo, and everything that comes after. I'm not very good at updating when I'm sad, which is a lot of the time. Sorry. If you're looking for the basics of my story, look no further. I'm also going to be taking a selfie every day I am in the hospital, and those can be found here.

[theanswerwascancer]

I feel like I've been hit with a car recently. I keep falling and my legs are all banged up like a little kids and my muscles are so sore and I've started limping a little bit because it's getting harder to hide. I don't want to be this weak thing. I'm trying so hard, but a lot of the time I can't even see because things are so blurry and I can't breathe because I get winded standing up. And I know everyone is getting sick of me. They're sick of helping me and being nice to me. I know they are. Everyone thinks I should be better by now. I think I should be better by now. And I don't wanna lose everyone because I'm still having trouble. I just want things to go back to normal.

[theanswerwascancer]

A Facebook friend of mine posted today "tired of hearing who has cancer ....... needs to go away" on a post about the latest celebrities wife to be diagnosed or some such nonsense. And I know she meant it in the "I wish we could cure this and people would not have to be diagnosed with cancer anymore." But I just wanted to shout at her. We're tired of having it!!! I too wish it would just go away!

[theanswerwascancer]

See this shoe box? It's crazy to think it's been almost a year since my diagnosis and start of treatment and these bottles full of chemicals are still necessary to keep me healthy and alive. What do you want? I got it. I got your anti fungals. I got your anti virals. I got meds for your liver. Meds for your stomach. Meds for going to sleep. Meds for waking up. Steroids. Allergy. This box has it all. And every month I go to the pharmacy. And every week I fill my little weekly pill container. And every day I take a handful of pills, twice a day. This is still what my life revolves around. Medications and doctors visits and cancer. Those are the "important" things. I don't worry about paying bills and working and laundry. I worry about making sure I take the right medication at the right time because I don't want chicken pox. I worry about flushing the tubes in my chest so the blood doesn't clot. I worry about low blood counts and magnesium levels. I worry about my liver giving up. I worry about my cancer coming back. I worry about dying. And I worry about being happy. Because I'm sad a lot. And I try to do things that make me happy. I try to save up my energy to go out when I can and travel when I can and be normal when I can. And people get mad because it seems like I'm doing better and being more active and they don't understand why I'm not taking on my old responsibilities and why I complain about the things I do. Because I can't pay bills. I can't work. I can't do laundry. Those things people complain about, I wish that was what I worried about day to day. I wish I could say I don't vacuum because I'm lazy. I wish I could say I don't cook dinner because I'm tired from work. I wish I could complain about the things normal people do. But I can't. Because I have to worry about shoe boxes full of bottles.

[theanswerwascancer]

Don't you dare try to tell me not to complain about everything I've been through. I went through my entire treatment so worried about everyone else and trying to be strong so that other people wouldn't have to bear any of those burdens. I held it all in all the time. I only cried at night with the nurses. There's so many things you don't know. And now it's coming out. I can't hold it in anymore. I'm so sick of being sick and not being able to do things. I'm sick of my knees hurting all the time. I'm sick of the tube in my neck. I'm sick of not being able to bend down to get something off the floor because when I stand back up I get such a head rush I almost pass out. I'm sick of not being able to remember the most simple of words. I'm sick of putting things in the wrong place. I'm sick of not being able to stand during the day without my head spinning and my legs aching. I'm sick of putting on a happy face for people and pretending that I'm okay. I'm not okay. I'm god damn fucking sick. And I'm fucking tired of it. So I'm gonna complain about whatever I want whenever I want and if you don't want to hear it then leave me alone to complain to myself. I don't need anyone who can't handle it around.

[theanswerwascancer]

I did too much today. Grandma was stressed and she made me more anxious than usual and I made sauce and meatballs and it came out good and I walked around the store by myself and now my head is pounding and I had to ditch my friends and I just feel so sick and awful and I don't even know if this run on sentence makes sense anymore I hate being sick I hate feeling like this I hate not being able to keep up with where I think I should I hate it I hate it I hate it.

[theanswerwascancer]

Long talks with fellow stem cell transplant patients are good ways to end long days. I like sharing my experiences with my family and friends because I think they're beneficial to everyone, but they can only sympathize. No one gets what it's like to sit in that chair, palms and feet burning, sniffling up a storm and in pain and have the doctor tell you to "just wait it out" unless you've been there. The frustration is astounding when sentences start with "Since your immune system is...." because it always ends with bad news and something taking longer than it should to get better. Finding cancer friends with was the best decision I made during treatment.

[theanswerwascancer]

On Weight Loss

My favorite thing has been people's reaction to me losing weight. Since my transplant I am down 40 lbs. I started off heavy. I'm still heavy. But that 40 lbs is noticeable. And people don't know what to say. They want to feel bad because I lost it because I'm sick and chemo sucked and it's a lot of muscle, but they wanna tell me I look skinnier because society says that's supposed to be a good thing. It's so funny.

[theanswerwascancer]

Death is such a funny concept to me now. I am both afraid of it and not at the same time. I am more worried about what will happen to the people who care about me when I die than I am about myself. Death is sad for the ones left behind. Funerals are for the living, not the dead.

[theanswerwascancer]

No one warns you about how weak you are going to be after transplant. How your muscles will just disintegrate from your body. How the simple task of opening a bottle or lifting a pot off the stove becomes so difficult sometimes you can't even do it. Most times you can't do it. I gotta start going up and down the stairs in my house and doing something for my arms. I need to gain some of my muscle back. I refuse to be this weak. I am determined to start getting my life back on track as best I can.

[theanswerwascancer]

Post Recovery Depression

My depression and anxiety were pre-existing conditions. Especially this time of the year, I struggle to make it through most days. And being post recovery has really just made it a thousand times worse. My depression is not always sadness. It often manifests itself in what most people look at as "laziness." I become unmotivated because nothing makes me feel anything anymore. I'm just numb. I don't find pleasure in things, but I also don't feel any of the pressures of society either. When I was in school I just stopped going to classes because I didn't have the motivation to care. Being sick, I have no responsibilities. I occasionally have to get up for doctors appointments. But I have nothing else. And I'm too weak to take on responsibilities. And so the past few weeks I have felt myself spiraling out of control. I make plans with friends and I look forward to them and when I get there I just want to go home. My friends, who I love, only irritate and tire me. I constantly cancel and bail on things because by the time it's time to go to the plan, I'm too exhausted and sick feeling. I feel like people are getting sick of me. Like they expect that I should be physically better by now. They don't understand how hard each day is still and the meds and the muscle aches and the body pain and all the things that I'm still unfortunately going through. And the more I feel like they're disappointed in me the more depressed I get and the more unmotivated I become. It's this cycle and I hate it. I just want to be better already. It was so much easier to stay positive and push through each day when it hadn't been like this for months. Not to mention, like I said before, this time of the year is already a really hard time for me. I just hope I have enough strength to survive the Winter.

[theanswerwascancer]

On Keeping Clean

So I really only have the energy to take a shower like, once a week at most. Sometimes I go almost two without being able to take a real shower because what really tires me out is having to stand for too long. So I take what I now refer to as a Front Bottoms shower (washing yourself with hand soap in a public bathroom), but what I used to refer to as a hooker bath, pretty much every morning. I have a whole wash cloth system to try to make the least amount of laundry as possible and everything.

Because being clean is really important to me and makes me feel better and I feel so gross that I can’t take a normal shower like a normal person, but I do the best I can with my washcloth baths to not smell and stay sorta clean. And that’s my advice to anyone who is struggling with anything where keeping clean is hard. Come up with some system that makes you feel even a little by better and stick to it. Because you need to stay as normal as you can, and you’ll feel better if you feel kinda clean. And if you think you can take a normal shower, take one.

I also suggest getting a chair for the shower because a.) it means you can take a shower more often because you have the ability to sit and b.) if you do happen to get overly tired you have the option even I you thought you didn’t need it. That way you can continue your shower without having to end it right away just because you got tired too quick.

[theanswerwascancer]

I do not have a lot of self esteem. I project self esteem, but it's not something I actually have a lot of, mostly when it comes to body image issues. And, on my good days, the only two things I liked about myself were my eyes and my face. I never really thought I had that bad looking of a face. I could work my angles and the lighting. And because of my gvh, I'm on prednisone that made my face swell up like the Stay Puft Marshmallow Man. I've got a double chin right now to rival Peter Griffins. And every god damn time I look in the mirror or catch my reflection, I can't help but be angry. I hate my face. I hate the way I look. One of the only things I liked even in the slightest and now I can't even stand to look at my own reflection. I look in the mirror and I hate myself. Cancer takes everything from you. Don't ever forget that. By the time cancer is through, you are a shell of what you used to be. Nothing survives. Nothing makes it through. You lose everything that ever made you a person. There's no winning or coming out on the other side of cancer. The person who got diagnosed gets killed off with the chemo and you're left to rebuild with what little remnants of your old life you can scrounge from the ashes. And trust me when I tell you, mostly everything is just ash.

[theanswerwascancer]

So I guess this blog is out there now. But I'm not gonna sensor it at all. So if you're gonna read it, be prepared to learn some shit. It's not always going to be nice stuff. But like, I'm not writing for you. So if you don't like it, don't read it.

[theanswerwascancer]

An Open Letter To Everyone I Know

Listen, I don't expect you to be nice to me because I was diagnosed with cancer. But what I do expect is for you to be prepared that I don't give a shit about your feelings over mine. I know that sounds really, really harsh. And if cancer has taught me anything, it's that it's a harsh world and you gotta get used to it. Before I really get into this, let me start by clarifying that I am the first person to tell my friends that their problems are just as valid as mine. My cancer does not negate other people's feelings. Other people still have feelings, I just also have cancer. Let's be very real and very clear. I am so sorry that you are upset about your problem. (Your grad school app, your mental health problems, your car breaking down, whatever it is.) I really am. Those are stressful and annoying things not lessened by any of my problems. However, at the age of 22 I was told I was on the verge of death and for the past 9 months have been literally battling with my own body for survival, which included but was not limited to enough poison to kill many many animals, multiple surgeries, living with an actual plastic tube in my jugular vein, the chance of death multiple times, the constant fear of any type of cancer reoccurring, loss of basically every muscle I've ever possessed and pretty major psychological damage due to isolation and extended hospital stays, just to name a few of the things I've gone through. So while your problems are totally valid and I want to support you, my life is shit. Which brings me to my point. I care about your feelings, but I will not put them above my own. I'll be honest. Your problems sound like bullshit compared to some of the things I've gone through. I spent almost three weeks where the palms of my hands and the bottoms of my feet constantly felt like I was holding them to the stove burners; literally on fire. I spent a month battling a bladder infection during which not only was I peeing out massive amounts of blood, but at some points I was sleeping on the toilet in the bathroom because I was worried about peeing my bed. I lived in a hospital room on two separate occasions for a month each and was pumped with chemical after chemical with little to no concern for how much I was vomiting or having diarrhea. I couldn't eat for three months because everything tasted like metal and I just threw it up anyways. Things still don't taste normal. I am on medication that is literally keeping my bone marrow from creating cells to attack the rest of my body. It's a tiny little war space inside of me. And so if I say something mean, or hurtful, or insensitive because I don't think your problems compare to mine, I really don't care if I upset you. And I'm sorry that I don't care. But I don't. I have been through some unspeakable things and my life is literally shit right now. I can't even make myself scrambled eggs because I am too weak to stand at the stove for that long. You have no idea what I have to do to be able to act functional in front of you. No concept of how hard I push my body on a daily basis to perform. I was at work with a hemoglobin of 4 before I got diagnosed. The nurses told me I should have been dead. I push and push my body past its limits all the time. I do that every day. I don't want you to feel bad for me. I don't want your sympathy, and so you'll never see how going up the stairs makes my legs hurt so bad I want to cry. I'll never show you how standing for longer than a few minutes makes me so dizzy I think I might faint. I push through it all every day so that you don't pity me. So forgive me for not caring if I hurt your feelings because I spoke my mind. My mind is to focused on not passing out from exhaustion to be able to give two shits about your feelings. So I'm sorry. And you are valid and so are your feelings. I'm just a bitch with cancer. And if you can't handle that, then you can't be here right now.

[theanswerwascancer]

Day -6

Everything sucks. I'll do this tomorrow.

[theanswerwascancer]

I feel so god damn sick right now. I finished my last chemo bag last night and got discharged this morning and I feel so freaking nauseous. This is awful.

[theanswerwascancer]

Sunday, June 14, 2015

Once again, I did nothing today. And it was great. I didn't sleep real well last night and I just laid in my bed and stared at the ceiling until Sami came by at like 12. Then we hung out and I painted with water colours and Erik came and we all tumbled together. Sami left around 4:30/5:00 and Erik and I just listened to music and talked. It's nice when Erik comes cuz we never run out of things to talk about. And even when we do its not an awkward silence. I never feel like I have to fill the gaps when I hang out with him. We talked about hooking up with people, and I thought about how long it's gonna be until I can do that again. It seems so silly because it's not like anyone is beating down my door or anything, but it just reminded me that not only am I not pretty to start off with, but now I have a thing in my chest and no hair so I'm even worse off. I can't wait to get my hair back and get this thing out. My nurse told me I'll probably need to get another Hickman put in before my stem cell transplant. Which means more stuff hanging out of my chest and another surgery and more pain and that just sucks. I'm so ready for this whole experience to be over with. It should only be a few more months but that just seems like FOREVER. And the hickmans don't even come out right away once it's over. I think they have to stay in for like 2 months after my transplant or some shit like that. I don't know. I desperately just want to feel normal again. But I go home tomorrow, so it'll be better.