It's a Cancer Thing You Wouldn't Understand

I pulled a hangnail last week my finger and hand swelled. It's a cancer thing you wouldn't understand.

I cried when my online friends Jill and Carollynn died and there was nothing I could do. It's a cancer thing you wouldn't understand.

I hate looking at myself in the mirror between the scars and chest I do not recognise me I can not look.  It's a cancer thing you wouldn't understand.

My body has changed so much I hardly can wrap my head around this rapid change nor do I want to. It's a cancer thing you wouldn't understand.

I have scans and blood work coming up and it makes me crazy with worry. It's a cancer thing you wouldn't understand.

I do not sleep at all even with medication. It's a cancer thing you wouldn't understand.

I am pissed off that everyday about 128 die from metastatic disease and the world just sits and watches. It's a cancer thing you wouldn't understand.

I can not fly or exercise without wearing a sleeve otherwise my arm swells. It's a cancer thing you wouldn't understand.

Sex?? BLAHAHAHAAHAH what was that again? It's a cancer thing you wouldn't understand.

My veins are shot getting blood drawn is painful. It's a cancer thing you wouldn't understand.

Lymphedema in one arm cording in another. It's a cancer thing you wouldn't understand.

My family worries about me so much I am sick of hurting them this way. It's a cancer thing you wouldn't understand.

I feel guilty I am alive. It's a cancer thing you wouldn't understand.

I forget what I was going to say. It's a cancer thing you wouldn't understand.

I am sick of hearing "because of your history we have to rule out cancer". It's a cancer thing you wouldn't understand.

My boys have  cancer on their medical history and it makes me sick. It's a cancer thing you wouldn't understand.

I have more doctors than I ever thought possible. It's a cancer thing you wouldn't understand.

PSTD is real and I have it! It's a cancer thing you wouldn't understand.

I have pain yet numbness in all my surgery sites daily yet you can not see my pain. It's a cancer thing you wouldn't understand.

I am scared of what radiation, scans and injections have done to my body. It's a cancer thing you wouldn't understand.

I feel like I am 90. It's a cancer thing you wouldn't understand.

Maybe you are reading this and you do understand because you had cancer. I am sure you can add many more to my little list. But if you are reading this with no cancer in your life first great I am so happy for you. Second, wake the fuck up! Cancer is not tied in a neat package, cancer does not end, cancer can kill. This is not about whether you can handle the truth or that you do not know how to deal with all this. It is about you understanding that this does not end with a simple surgery or with chemo or radiation. Surviving is an overrated term, we are living through this DX. Some are dying with it. It is time to bring these topics to the front page and stop hiding behind ads of cancer prevention bull shit. We are preventing shit we need to make ourselves strong machines so that we can attack our DX the best way possible.

Understand just because you have "moved on" from cancer the person dealing with it has not. Respect them for their sometimes unseen pain.  This is not a boob job do not make this sexy because sexy is not relevant. Respect the fear of recurrence do not tell us it can not come back, we know different. Honor our friends who have died do not tell us they lost their battle, they did not lose anything. Know that we are scared and have every right to be, stop telling us it will be ok. I know this is hard for some but say nothing just a hug. Keep your hands off my tiara I will smack you. Do something bigger than baked ziti. Rides, babysitting, laugh with me or donate to research not walks. We can make a change if we just put our voices together to be louder and stronger for all to hear. 

It's a cancer thing you wouldn't understand, but you could!

Thank you for being a friend

Fact- I have made the bestest, most awesomest friends since my diagnosis. I mean they are the best. Some have become like sisters to me. One I even traveled to go see this weekend. It was epic to hug her (not to tight the girl is  mess) but the reality was a quick trip to the doc to have her checked for some serious pain. Fucking metastatic cancer. I loved every part part of being with Seporah this weekend. The food, her town, her hamster and fish, the laughing but hated with a passion the cancer part. NO it wasn't all about cancer but her pain was clear and how it effected the visit was yet it didn't matter if we just sat and did nothing either proving what amazing friends we are. I hated leaving her, hated it like a child hates to part with it's blankie. We needed this weekend like oxygen and I would not trade it for anything but watching her color change from walking too much or having to pick up her friggin nasty tissue cause she was in pain told me a different side to this. The reality of our friendship. The sisterhood is real, I mean I traveled 4.5 hours to see the freak not knowing what I was getting into. Granted I brought Tom but what good is he really the big sap! I would be lost with my skittle butt and devastated if she wasn't part of my daily routine. 

 I will not say that I met her or any of my peeps because of cancer I refuse to give cancer the benefit of giving me anything especially these fabulous men and women. I do call them my "cancer friends". They get it, they understand all the effed up shit that comes with cancer. And I mean all of it. There is so much emotional baggage that sometimes I think  it out weighs the physical. So the truth be told we need each other like oxygen. Studies show that 70% of those who find a support group do better in their healing, hence the reason I have created Bravery Bags, Warrior Wellness  why I work for pages like Cure Diva and the Googe Chat.

BUT here is the thing. As much as I love Seporah, Lisa, Bob, Kate, Nancy, Tali, Efrat, Norma, Val, Mabel, Remi, Knot, AnneMarie, Val, Jo, Emily and so many others. Some of them I talk to daily and all day. I need them like my family. BUT if someone came along and said "if you could get rid of cancer but all those friendships would go would you?". WOW, ummmmmm yes I would. Cancer ruined their life, altered and destroyed them. It has killed my friends Barbie, Jen, Shelly, Kim, Jennifer and so many more. So yes as much as I love these amazing people in a heart beat I would lose that and that breaks my heart at the same time. If only this was that simple it is not, cancer is here but the thought entered my mind so I had to put the thoughts down. And after this weekend it would be even clearer. I am honored to know Seporah but for her to never have cancer would be an honor beyond existence. One that even me typing this is making me cry because I know that it is a dream, warped right?

Our relationships are s vital to us living through cancer. Our diagnosis are all different, our take on cancer may not be the same, even our time zone are not lined up but we connect. We connect in a way that makes us push our crazy butts through this cancer world. We love each other and understand the screwed up, surgery, chemo, radiation, tamoxifen, scared ways that cancer leaves us. We get that some days we don't want to be positive happy go lucky freaks that we just want to cry. We know that sometimes we just want to laugh at our loop-sided nippleless breasts that are sewn together with our butt (yes sometimes we have butt-boobs). We want to dream we never met and never got cancer. And some days we drive 4.5 hours so give each other a hug in real life because we love each other so. 

I am just glad I don't have to give them up. I am also glad that none of these cancer friends will take my tiara or boa or stilettos, well Bob might but that's a different blog! 

Don't you get sick of talking about breast cancer?

The other day someone asked me if I get sick of talking about breast cancer and while she is just 14 I really have thought that was an intense question (she didn't mean it that way). I think people who do not have cancer or any lasting illness do not fully understand just how sick of it we are. Just cause you can't see what we are dealing with you expect us to be over this when our reality can not bring us away from it.  Yes, I do get sick of talking about breast cancer for sure. I get sick of dealing with it every frigging day!  I want to forget it ever happened to me but that can not happen for many reasons. I have tried very hard to remove my family and friends from my every day talkings of my cancer life sorry if it filters in but this is my reality now. They are probably reading this thinking BULLSHIT but really you have no idea how much more I want to say. This is what I wake up and deal with every single day, that is when I sleep. I think for them because I am not recovering in a hospital from a surgery or bald from chemo or dealing with burns from radiation they think "well she is all done". Such is not the case.

The scars are so painful it hurts me physically on a daily basis. That being said I now have Phase II of my DIEP coming up where my doctor will address this, he is going to literally cut the two scars off and make just one in hopes that will ease just a little of the pain and scaring of the keloid.  He will adjust the new foobs and help with the nice side fat I have from my tummy scar. I keloid on the side making a constant muffin top and I have fluid built up, nothing a little lipo cant help. FACT- I never asked for this cancer gave it to me. When I look in the mirror naked (which is rare I prefer the neck up) I see nothing but a breast cancer scared women. Yes I am sick of talking about breast cancer but how can I stop when this is what I see daily.

I can not sleep at night because my body is aching from my lymphedema and cording and numbness and weird pains in my breast  that were not there before. The tingling that is in my hands and feet that make them feel like they are asleep and hurt like pins and needles keep me from getting a good nights sleep. My joints ache and I can not get comfortable at all because of my chest being well in pain.  Yes I am sick of talking about breast cancer but how can I stop when I can not even get sleep because of it.

Doctor, doctor, doctor! See as much as I want to get cancer out of my life I have a doctor appointment every other month if not monthly. Then there is scans and blood work in addition to the doctor visits. While you know it will be ok (please breast gods let me get a pass) you just get sick to your stomach every single one. Enter scananiexty which builds really all week. You are poked and jabbed and scanned and felt up more than you ever thought possible. You sit and wait in doctor offices waiting to hear "no evidence of disease" and you breath a sigh of relief until the next time. Yes, I am sick of talking about breast cancer but my doctor appointments make it impossible to avoid.

I have made some of my best friends because of stupid dumb breast cancer. We have formed this bond that is unbreakable. We relay on each other to lift us up to lean on and to commiserate with. We watch as some have been taken away from this disgusting disease. We are then filled with grief mixed with guilt and heart break and a touch of relief that it wasn't us which just adds even more to our survivor guilt. I am completely sick of this cancer world but know that this is my bizarre world that I hate yet love but will not leave because my family is here and they know just how I feel. Yes, I am sick of talking about breast cancer but I will never leave them because I need their support as much as they need me.

Breast cancer never just ends it really does not. Each day does get a little better. We find ourselves as first the newly diagnosed trying to find our way through this and understand all the lingo and the grasp what the hell is about to happen. We start making connections and figure out which we fit into and who will help us the most. We then ease into the surgery and  treatment part where we need the guidance and tips of those who have been there. They help us more than our doctors (even though we do love our docs). We form more bonds and find ways to laugh at our nails falling off and drains hanging from our body because these amazing people have been there. Then we start to be the ones who really are just trying to adjust to the new normal, the ones living the post traumatic stress of the after math of cancer. The "WHAT THE ACTUAL FUCK JUST HAPPENED?" because I am still processing the last two years!  Cancer puts you on a full force roller coaster and sends you off on a hell ride leaving you dazed and confused from it all. The after math isn't just about your body adjusting it is about your mind healing as well. The emotional scars do not seem to ever really go away or maybe I am still at the healing phase so the jury is still out on this part. Soon we become the veterans the ones who have been through it all and we want to help those in all stages of this roller coaster ride. Yes, I am sick of talking about breast cancer but shit my head is still on this ride!

So there you have it -sick of talking about it but will not, can not, and won't stop. I wonder if this will help those without cancer to understand why we can't stop. We want to but can't. Here is the thing. Those "cancer free" moments-you know when you are out to dinner with you friends, on a walk, sitting and just relaxing, listening to your kids fight, or maybe exercising whatever that is- that moment when for even a second you do not think, talk breath or FEEL cancer. ATTACK it. Embrace it and be cancer free, cause let's face it that is a state of mind not medical term. Shine that tiara and truth be told through all this talk, pain, treatment and surgery are NOT cancer.