“and i cough up my lungs because they remind me how it all went wrong”

by kaleidegirl

i don’t have cancer and don’t/haven’t known many people who deal with it but someone posted a blog entry on FB that i related to so very much.

it was written by an oncology nurse who has been diagnosed and is battling cancer and is apologizing for how she “didn’t get it” until now.

i know. do i really need to blog again? no. but i will anyway cuz you don’t have to read if you don’t want to and i need to do it. for my sanity.

i read this post and just kept thinking, “yes, this, i get it”.

it is very well written.

so…

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it.

being diagnosed for me was a scary slow process. things were so frighteningly vague. “lung disease” at first. that was it for awhile and i am embarrassed to say i never really knew how my lungs worked anyway. i just knew breathing was hard when i exerted myself and realized this had kind of been thing most of my life. like i could never run and i remember times when i over did it on the dance floor. i always just thought i was out of shape. the lung biopsy and 20 days in the hospital that followed, being on oxygen 24/7 all of a sudden…that was when shit started to get real. at first i was flat out terrified and certain i was dying, like any day. while in the hospital though i had to learn to control my crying because it was using up oxygen i didn’t have and i wanted out and they weren’t going to let me loose while needing so much. i kept working on controlling the crying even after i was home but it was real hard for awhile. then i had a good talk with a great nurse who explained things a bit better for me and for awhile there was some hope. i was able to decrease my oxygen needs and was showing improvement. my dr said i was a long way off from even having to think about a transplant. within 6 months though…back in the hospital and being transferred to the transplant team. the treatment wasn’t working. this was my best chance. for awhile that was extra scary because the average survival rate after a transplant is about 5 years. that is just a number though and many people are going on 20+years.

I didn’t get how awkward it was to tell other people the news. You didn’t know what to say. They didn’t know what to say. No one knew what to say- but there was some relief when the word started to spread. It may have been overwhelming to reply to all the calls and messages- and to get used to others knowing such personal information, but this nasty secret you’d been keeping was finally out and your support system was growing. I’m sorry. I didn’t get it.

at first most people were fairly informed thanks to FB but really this is an on going struggle when you have to wear oxygen. most strangers don’t say anything but some do. people have given me shocked looks and said things like “but you are so young!”.  this is mostly an issue when seeing someone who is not on FB for the first time since i got sick. they see the oxygen and have this sad confused look as they ask “so what’s this all about? you ok?”. you want to make them feel better, erase the look of concern and act like it isn’t such a big deal. once in awhile though someone will ask what the prognosis is. they know its serious and want to know how serious and how do you tell someone you are in fact dying of something there is no cure for? my particular flavor of lung disease has a survival rate in the 5-13 year range. transplant is your best chance at survival and life is sketchy and scary until that day comes and kind of always will be truth be told. i don’t have much practice at explaining this and only try depending on the person. in general i do my best to be as hopeful as i can.

I didn’t get how much you googled. I told you not to do it. You did it, a lot- and so did I. Searching for information, hope, stories like yours, reassurance. It was impossible not to. My new stance is to just know what a good source is when you google. I’ll help you learn to filter the information. And I promise to give you more information, because I know how much you crave it. It’s not realistic to think you will have the willpower to not search at all (at least it wasn’t for me). I’m sorry. I didn’t get it.

yep. i knew better but i was desperate for information. things were so very vague for the longest time. my actual diagnosis is in fact the epitome of vagueness. NSIP, non-specific interstitial pneumonia. “non-specific”. they can only guess at what the cause truly is of the two most likely possibilities, it could be both. i will feel very foolish trying to get more information from my dr tomorrow. i hope she just has some paperwork or something that she gives people who just can’t make sense of “non-specific”. she’s a great dr but i feel like she will be annoyed at my questions about something i should probably have already gotten a handle on understanding a long time ago now.

I didn’t get how weird it felt to be called “brave”. It’s a word that gets thrown around a lot, yeah it kind of made you feel good- but you still didn’t really understand why people would call you this. Sure you were getting through it fine (most days), but it’s not like you had a choice. I’m getting treatment because I have to- doesn’t really make me feel like much of a hero. I’m sorry. I didn’t get it.

omg so much this. when you spend almost your entire adult life hating yourself, certain that you are flat our worthless…things like this are very foreign to you. you certainly never felt “brave” or “strong” before and you don’t now. i exercise because if makes me feel better, helps me breathe better. i do what i do to stay healthy because it is very literally a life or death thing. i’m not brave just most of the time terrified of dying. so i do the things.

I didn’t get the mood swings. One day you felt confident that you’d completely beat this with no problem; you felt like you could take over the world. And for no good reason, the next day you were just convinced yours was going to be one of those sad stories people tell their friends about. The moods snuck up on you without warning. Literally anything could’ve been a trigger. I’m sorry. I didn’t get it.

i am no stranger to mood swings. these days though…that shit is next level crazy. seeing people dancing or running on TV brings up so much bitterness and sends me into either a fit of “i can do this!” or “i will never do those things again.” type of moods. that is just one example of “Literally anything could’ve been a trigger.” my rapid cycling bipolar makes these mood swings even more frequent and volatile than what i had been dealing with before my diagnosis. luckily for those around me i think i learned a long time ago how to keep these things to myself. it eats at me but i do my best not to drag others into my madness.

I didn’t get how much time this really takes away from your life. I always used phrases like “Cancer is like getting another full time job” or “Life doesn’t stop for cancer” when trying to prep you for what you were about to embark on. But now they just seem like corny catch phrases. It completely took over, you had to stop doing things you love, you had to cancel plans, you had to miss out on things that were important to you. It just wasn’t in any plans- and that alone took a lot of mourning. I’m sorry. I didn’t get it.

if you read this blog or follow my FB then you probably know that every aspect of my life revolves around my busted lungs. i am not even exaggerating. i obsess all day every day about food and exercise because i have to get and keep my weight down. i have to make sure i can have enough oxygen at all times depending on what i am doing. do i need to turn my oxygen up before i do this new workout? yeah i better just to be safe. which size tank do i have to carry when i go out? omg that person almost coughed right on me am i going to get sick and end up in the hospital now? these are just a few of the things i stress about on a day to day basis.

I didn’t get that it hurts to be left out. People didn’t invite you to things anymore. People felt like they can’t complain or vent about every day annoyances to you anymore. People acted differently towards you and it hurt a bit. You certainly didn’t blame them- you had even done the same to others when traumatic life events happened—and no you didn’t want to go out for drinks anyway because you don’t feel good. But you needed normalcy. I’m sorry. I didn’t get it.

this has become one of the harder more depressing things to deal with. we went to a holiday party recently and it was great to see people i missed so much but then i had to leave, didn’t get to see some of the people i had been hoping to see and it was sad to realize it had been over a year since i had seen most of these people. a year. once upon a time i was at some kind of gathering at least a couple times every month connecting and keeping up with everyone. i get that it is probably an awkward situation for people but truth be told i feel forgotten. i know i have been hesitant in the past to invite someone out due to something similar at some point. it feels like a courtesy but now i know it doesn’t feel that way to the other person. it is what it is.

I didn’t get the guilt you felt. Especially to those who are married. You thought about how unfair it was that your spouse had to pick up so much slack- mentally to help keep you focused and calm, and physically at home pulling double weight with never-ending every day chores. You understood that everyone promises “in sickness and in health” when you get married- but you still felt like they didn’t deserve this. You felt thankful when your spouse would say “go get some rest and I’ll take care of the kids” but your heart hurt overhearing them play in the other room away from you- wondering if that was a glimpse into their future that didn’t have you in it. I’m sorry. I didn’t get it.

i have enough guilt to start my own religion as it is. that is just my life but now it is so much worse. he does so much on top of working more than full time at work. i feel like a burden in so many ways and not nearly worth all the trouble. he makes sacrifices big and small because of the things i can’t do. i feel like i turned his world upside down and think maybe we shouldn’t have gotten back together. he could have been with someone who wasn’t so much damn trouble. i’m sure i wouldn’t be alive today if it weren’t for him though and my daughter wouldn’t have had such a great father all this time. i feel as grateful as i do guilty.

 

there is a lot more to the post but these are the things that resonated with me. the things i could relate to. i’m not trying to have a big pity party here, i’m really not. things are just feeling especially difficult lately. maybe being on the transplant list is a little too overwhelming for me. maybe it is the holiday season. maybe i am still not getting enough sleep. maybe i just really need a fucking drink.

 

Advertisements