Shut the F Up!

Leave it to Angelina to stir up controversy. Apparently everyone is an expert about cancer now...especially people who have never had it. This post stemmed in part from yesterday's post, and my stupid stupid obsession with reading the comments section on articles, and comments some of my facebook cancer friends are receiving. I should NOT read the comments! EVER!! Anyway, it's been brewing for a while, and after chatting with some of my facebook cancer friends, it just needs to come out. If you are offended by language, change the channel.


1) If you feel the words, "Oh, lucky you, you'll get new boobs" coming out of your mouth...shut the fuck up, just seriously, bite your tongue off if you have to, drink some cholula, occupy yourself by going to get a tongue piercing, I don't care, just don't say it. If you want to type or text it, sit on your hands, learn sign language, break your thumbs, do something else with them right quick please.

Sure, most of us will go through some sort of reconstruction at some point. After we've been mutilated with a giant horizontal scar, after we have lost anything resembling a breast, after our underarms are misshapen if we have had lymph nodes removed, after we have lost feeling in multiple places. Then you get to choose from procedures involving the insertion of an expander behind your pectoral muscle that is slowly filled to stretch your already delicate skin, worse if you've been through radiation, or you get skin and tissue taken from your back to rebuild a breast, or from your abdomen. You can take visions of Pam Anderson right out of your head because what you are left with, if you are lucky, is serviceable, and if you are really lucky its close to symmetric. This is not a visit to Dr. 90210. Additionally, I'm sure 100% of us would gladly trade this opportunity for new boobs to, umm, maybe not have to have a life-threatening disease that could recur at any time...you think, maybe, hmmmmm??? "Thank God I got cancer, I can have that boob job I've always wanted" said NO ONE EVER.

2) Unless you have cancer, or maybe possibly your spouse or child has had cancer... please don't offer any "knowledge" that you have about how I got it, how I can cure it, what I should or should not be doing, what you heard from your friend's cousin's hairdresser, or how your high school teacher found the cure in the Amazon and is only sharing it with certain people. Please don't offer what you think are mortality rates ("oh, most people die from that right?"). Almost just as bad, please don't say, "Oh, everyone lives from that these days, no problem, no biggie!" Please don't tell me that not eating sugar will keep all the cancer away, that I should have been doing juice cleanses since I was 12, that hemp oil will cure me, that chemo kills people, the mammograms cause cancer, or that I could have prevented it by following these five simple steps. Shut the fuck up.

3) If you know someone going through cancer treatments, don't tell them that they put on weight/lost weight/look tired. Believe me, we very well know if we are gaining weight, usually from chemo and steroids and any number of medications we may be taking. We may not be able to keep up a robust exercise routine right at the moment. Also, believe me, people know if they are losing weight and that could be because they can't keep any food down, are stressed beyond belief and have no appetite, or they may not be doing very well. Either way, you don't need to point it out, that I can assure you. Don't you dare tell someone they look tired. If you haven't had chemo, surgery, radiation, and in my case, an infant at the same time, then don't even open your mouth. Cook them some food, clean their house, tell them they are beautiful, bring some flowers, but otherwise, shut the fuck up.

4) Please do not reprimand the person about keeping up a positive attitude, that a positive attitude will cure them. Believe me, I honestly have had a pretty damn good attitude during this entire mess, but some days are just sad, gloomy days. There aren't many, but when they hit, they hit hard, and you know what? I am perfectly entitled to have them! I bet you have bad days and you don't have cancer! I know sometimes it's just because you are scared for the person, and when they are sad, it scares you more, but this is their time, not yours. It's your time to be the strong one. If you can't, shut the fuck up.

5) Cancer has made me many things - blind and deaf are not some of them. Poor eyesight has made me almost blind, but you know what? Glasses have pretty much fixed that, and I can see you staring and I can hear you "whispering". If you see someone with a bandana on, don't stare. Go up and say Bless you, or I'm rooting for you, or I'm sorry you are going through this, please stay strong..say almost anything, but don't stare and don't whisper. I still and will always remember the man who came up to me and bought me lunch when I was so heavily pregnant and bald in my bandana - not because he bought me lunch but because he was the only one during my entire bald pregnancy that came up to me and said something. He said I don't know what you are going through but good luck to you, you will get through it. Not the most eloquent thing in the world, but something I will always always remember. So basically if you can't say something, don't whisper in front of my face - shut the fuck up.

This is not even half of it, but it's a good start for me...thank you to all of my friends and family who have not done these things...you don't know how much it is appreciated...

Chemo brain

For those of you who have been pregnant, you know pregnancy brain is a real thing. Some may get it worse than others, but for the most part, every woman I know who has been pregnant has had some degree of pregnancy brain. Now, try being pregnant AND going through chemo and I often wonder how I even managed to keep Jack dressed and safe last year. Thankfully, the pregnancy brain has subsided, but the chemo brain is definitely still showing its pretty little head. For me, the biggest effect that I have noticed (maybe there are others that I just don't remember that I've noticed, who knows!) is that I often have a very difficult time finding the word/s I want to use. For someone who had made their living as a writer (not the fun kind) and always took pride in her slightly colorful use of vocabulary, to not be able to place the correct word that I want to say or write, to literally sit there for a good length of time searching my addled brain for what I am looking for, is absolutely maddening. Don't get me wrong, I forget things much more easily now also - some bills have fallen by the wayside, and this is from a person who is exceedingly careful a.k.a. tight with money and a stickler for paying bills on time; I leave things in incorrect places and then either forget about them or wonder where they are - what I do NOT do is forget anything my husband tells me, so when he tries to say I told you that but you must have forgotten....no. :) Anyway, here is an article saying I'm not crazy! At least about this...



http://www.breastcancer.org/research-news/20130425-1

You might be a redneck...

If your neck is actually red because you are apparently radiosensitive and start turning red after the third treatment! Go me! I asked my tech on Tuesday, "umm, so is it normal to start turning red already?" and he laughed and said, "nooo, we usually don't see skin changes until after week two (ten treatments). But that means you are radiosenstitive so this should all be working really really well on you!" Fabulous! I'll have no skin left, but awesome! Ugh.

Semantics.

Well, since I have no CT scan results to post, I occupy my brain with a different topic. Finally got my gumption up to call the doctor today to ask for the results and the girl who answered the phone said, okay I'll send a note to Dr. K, but he's not in until Tuesday so he won't be able to give you these results until then. I said oh, has he been out, and she said, yes, he's been out all week...ooookkaay then, thanks.

On to "other topic" - the vernacular of cancer. I am not comfortable with most of the vernacular of this lovely disease and I find myself cringing more and more when I hear certain things. I'm not sure why cancer has such a separate language. Maybe because it's one of the few modern diseases that, while utterly terrifying and devastating and deadly,  actually can be "cured" in many cases. I don't know. But these words that are used - fighter, warrior, survivor some of the most common - they make me uncomfortable and here is why.

I've been around chronic disease all of my life. My uncle, mentioned a few posts ago, developed Type 1 diabetes when he was 9, so it was always around me. I saw the shots every day, I saw insulin reactions, it was all commonplace. He didn't develop many serious complications until I was in my teens but I was always aware of illness. My college ex-boyfriend was also diabetic, what is termed a "brittle diabetic", meaning his diabetes was very difficult to control. I saw the inside of a hospital almost as much as I've seen in the past 9 months for myself. As much as they went through, the pain, the inconvenience, the devastation, they were never called "fighters", they were never "battling" diabetes, no one ever told them "kick diabetes' ass" - they just had it. And they weren't called survivors for every year they stayed alive. I had a cousin who was bedridden as a result of MS from before I was born until he died when I was around 11. He didn't battle MS, he just had it. My grandfather battled on Iwo Jima, but he didn't battle or fight the multiple strokes and resulting dementia that he suffered for ten years. People with ALS or cystic fibrosis or lupus, the list goes on and on, these people are never called fighters - they are always just referred to as having their illness.

Two people  have used the word survivor with me now, one called me fellow survivor and one said I had a great survivor story. The thing is, to me, I'm not a survivor. What denotes a survivor? I haven't been cleared yet, I don't know what's in me or not (see first paragraph), I haven't even finished treatment. When I was at the Komen walk last year, they had the "survivor's tent". I stood there and wondered what the hell does that mean? Do you have to have a Dr's note saying you are cancer-free to be let in the tent? Do you have to be in remission for a certain amount of years? If you are in treatment, you aren't good enough to be let in the tent? If you relapse, are your tent privileges revoked?

When I first told people I had cancer, many of them told me I would "kick cancer's ass". (please, if you were one of them, I'm not singling you out, I'm just giving you my perspective, and my perspective has evolved as I've lived in this world). To me, and I know it's not meant to, but it sort of puts the onus on me right there - I need to battle this, fight this, kick its ass! And it's not just me, that's a common phrase used - I have a high school friend going through her second round of radiation now for a very uncommon type of nasal cancer - some of the comment's left for her by her friends tell her to kick cancer's ass. If this gets one of us, did we not kick ass hard enough? Were we not bad ass enough? Another friend from high school passed away almost eight years ago now from an exceedingly rare type of pulmonary sarcoma - she was an awesome person, very spunky, very bad ass - no matter how much cancer ass she kicked, it was likely not going to be enough. She didn't lose her battle, she didn't not fight hard enough, it just happened. There was nothing she personally could do that she didn't do.

I'm not even a fighter. I'm just doing the best I can with what I have, I'm doing the treatment that most everyone else does. Luckily my tumors responded to at least the A/C chemo. Did I choose to do the treatment where others may not have? Sure, but I don't know their situation and I have no right to say someone gave up or didn't fight because they chose not do do a certain treatment.  The whole warrior lingo, the battling, I just don't like it. If someone doesn't make it does that imply they didn't fight hard enough? They didn't "kick cancer's ass" hard enough? They lost a battle? I know it's not meant with anything but the best intentions and I don't begrudge whatever words people want to use to make themselves feel better, but for me, these words leave a bad taste in my mouth.