Beyond the Pink

What has changed this month in Breast Cancer Awareness month?

Lisa Frost, diagnosed in 2011 with Stage 3C lobular breast cancer, never had a lump.

Has it changed? I am not sure. I still see all kinds of crazy pink products out there that don’t make any sense and don’t seem to have any clear information connected to actual donations or charities. Just the other night my daughter’s cheer team had their “theme night”. They all dressed up in pink attire. I had a talk with her afterwards about what it actually meant and sadly it meant nothing. There was no education, no fundraising, no talks of breast cancer at all. It was “just fun and pink.” Everyone knows that October is breast cancer awareness month and everyone knows that it is associated with the color pink, but unfortunately a lot of the time it doesn’t have any significant meaning.

On a positive note, the announcement by VP Joe Biden on the Cancer Moonshot, coincidentally or not, gave this month’s awareness a boost I believe. At least in the breast cancer community. They are working on speeding up the federal drug approval process and making it easier for patients to take part in clinical trials. Metavivor, the non-profit organization that gives 100% of their donations to metastatic breast cancer research ‘commits to funding $1 million in metastasis research grants in 2017 and double that in 2018.’ That is great news for the metastatic community considering only 7% of all research goes to metastatic cancer (all cancers). It was actually nice that this news came out this month. It also came out right after the metastatic community made their march on the nation’s Capitol for more funding as well. So all in all this was probably a better October than most of them. Hopefully it is a trend and not just a one-time thing.

AnnMarie, diagnosed in 2012 with Stage 1 breast cancer after finding a lump herself.

Lisa, I agree with you about the pink. I loved pink before I realized what a marketing scheme it is. I see pink everywhere yet it is going to nothing. At the same time, I think it would be great to use this to discuss what some serious issues are. So many of us are suffering from post-mastectomy pain, lymphedema, post-traumatic stress syndrome and anxiety about our cancer coming back that it is time to discuss this part. Breast cancer is not tied in a pretty pink bow; it has some hard reality issues for so many. (Even divorce and bankruptcy but we never talk about that.) You mostly see “survivors” smiling and embracing this part of their life when the truth is far from that.

On the other hand, when Met Up organized the rally to capitol hill there seemed to be a shift. Not just Joe Biden and the Moonshot but more real talk about our Stage 4 friends. It took Mira Sorvino with Champagne Joy marching the steps of congress for a newspaper to pick it up. While I was thrilled and excited that the Washington Post picked up the story and posted it, it drove me crazy that it took a celebrity to make a headline. What about all my friends who have died why didn’t they make the news? Why doesn’t my friend who is dying get a story without celebrity status? Nonetheless, progress is progress and now that we have their attention where do we go from here?

What would an incredible “Breast Cancer Awareness Month” be?

AM- You know I am a little devil right? So my thought is to use the pink crap to talk! Just like you did with your daughter we all should be educating people on what the money is and is NOT doing. We can use that pink to talk about PTSD and get those living through it real help with resources that care. How about highlighting local non for profits that may not be researching but really helping their community with co-pays, gas to appointments, mortgage payments and more. And most importantly how about stopping the deaths. That is the research we need, stop those with stage 4 from dying. When we do that we could research how their cancer spread, what is working and maybe find a cure by making metastatic cancer a chronic illness.

I am not stage 4, I was an early stager. But the reality is that 30% of those diagnosed with breast cancer become metastatic. I cannot ignore that 30% because that could be me but more importantly it is my friends.

Lisa- I actually think that is a great idea. There are many needs where breast cancer is concerned. Without a doubt metastatic patients need more. The only breast cancer that kills, it goes without saying that they need more research, but there are other needs with breast cancer as well. There are all stages that have financial strains, survivors living with horrible side effects from chemotherapy, radiation, and surgery. There are women/men with young children and families that need child care, meal preparation, housekeeping, etc. Not everyone has a great support system. The list of needs can be long starting from diagnosis to treatment and afterwards. We may not always be able to get funding for research, but we might get local organizations and non-profits to donate or offer services to patients.

Together Lisa and AnnMarie give their thoughts on the future

I think that the one thing we can do right away, something that will plant seeds for the future of breast cancer awareness, is to talk to our children. I have 4 girls and you have 4 boys. We have started in our own homes talking about the realities of breast cancer and all that we have learned from our own experiences. Even though we do not carry the “known genes” for breast cancer that doesn’t mean our children are not at risk. We don’t know what genes will eventually be identified in the years to come. With my boys, I want them aware and educated on their chances of getting breast cancer. I want them to feel comfortable talking to their doctors. Regardless of the genetic factor there is always important awareness. I talk to my daughters about checking for lumps and early mammograms, but also that cancer is not always a lump and cancer is not always detected on mammograms. This information is so important to know. In the last several years I know that both of us have been teaching our children what the “Pink” really means. They need to know how important it is to take their health into their owns hands and be their own advocates for themselves and their future families. Not all doctors ask the right questions. Our children will have to ask them.

Knowledge is power when it comes to our health.

Mesothelioma, say that again??

Mesothelioma,  what the hell is that? I read once there are over 200 cancers so when I heard this I know I was going to be on the cancer track. Damn that track sucks!. The technical answer is mesothelioma in it’s most common form is the cancerous type, usually affecting the lungs. It can show signs like a cough, chest pain, and shortness of breath. Mesothelioma is a type of cancer that can be found in the lungs, lining of the abdomen or heart that's caused by exposure to asbestos fibers. It is most  commonly caused by exposure to asbestos because it does not show up until 25-30 years later the cancer is more likely to spread cause it difficult to treat.  Treatment is typical and may include surgery, radiation, and chemotherapy. But what about the emotional aspect? We all know that cancer is not just a scientific problem that the mind and body are greatly affected.  To understand I will tell you about a friend Heather Von St. James.

Heather was diagnosed with mesothelioma early in her life from being exposed by wearing her father's work coat. Yes it can happen as simply as that. Asbestos comes in the form of fibers that become dangerous when released into the air. This happens when the asbestos itself grows old or becomes disturbed. When receiving a mesothelioma diagnosis, a patient's prognosis is most likely going to be poor. Heather was given just 15 months to live and this was  just 3 1/2 months after giving birth to our daughter Lily. I know so many that get a cancer DX after having a baby. I can not imagine the emotions they go through. Heather was only 36 and the news of this was difficult to say the least. Heather  underwent extensive thoracic surgery, known as extrapleural pneumonectomy, with adjuvant intra-operative heated chemotherapy. She was declared NED (no evidence of disease)  later that year. Her recovery from the disease is unique because malignant mesothelioma is a rare, aggressive cancer usually seen in older patients. When treated the average life expectancy is 6-9 months, Heather is a rarity for sure.  

Heather is a complete badass advocate because she has overcome so much with this cancer she is the voice many need to hear. Heather advocacy is to get asbestos banned and removed from buildings to eliminate others going through what she has.  In her recent blog she started it by stating “I learned early on in my cancer treatment what a cruel, unfair thing cancer can be. It doesn’t care who you are, how old you are, or how much money you do or don’t have. Cancer has one purpose, to destroy the host, no matter who that host is – and many times, it succeeds.” This statement was so true to me I felt that everyone must know Heather’s story.  There is so much to cancer that people who have not been there do not understand and Heather does an amazing job of stating that, as I always say “cancer is cancer”. No matter what type you have we need to share each other’s story and help stop this unforgiving disease.

About 3,000 people are DX with mesothelioma each year and 2,500 deaths every year-that is horrible odds! I think we need to start by looking at the way we are exposed to asbestos. Military, construction workers, commercial and second hand exposure are all ways we can be exposed. Read more and know if you are at risk. If asbestos is still not banned in the US that means our work, home and where we shop is still affected.  We also need to find out how we can ban and remove it from our lives. There is legal help out there too. Know your rights!

On September 26th Heather is “Dying to be Heard”. Join Heather and me in spreading the word because no one should get a prognosis of 10 months to live.

No tiara today

I couldn't get out of bed today but I did. I couldn’t walk on the treadmill but I did. Not because I wanted to but because I needed to push as much as I could.  I did however get in the shower but I could not get dressed without tears of pain. Screaming for my husband to help me my body was frozen in such pain, legs numb and tingling, eyes blurred and hurting. It took thought to make my legs move, it was like my brain was not reaching them. He helped me to the couch slowly each step so excruciating my tears were uncontrollable. His eyes filled up with tears and fear. He gently helps me to the couch wincing as he does- scared he will make it worse. I lay there not because I am lazy but because I can not do anything else. I moved slow throughout the day each step hurts as my foot hits the floor, I can not feel it but the pins and needles remind me it is there. My face tingles to my lips causing me to feel like I am going mad, maybe today I am. The right side is not only numb but tingling so much. My right eye is blurry and aching, I am having floaters all day. The spasms in my leg jerk my body which makes my back pain sting. By the end of the day I am dragging my right leg and needing assistance walking even ten steps. I notice my clothes are on inside out but at least I am dressed. The kids make dinner and the worry sets in their faces. When mom can't cook she is hurting in a way that scares them.

I work pushing through the pain. Laughing and trying to stay focused yet each breath is a reminder of the hurt while my legs are numb no matter how I sit. Work, pain repeat until I can not take it any more. I must sleep, laying down finding a spot that is not too awful I crash hard to the sound of kids playing, lawn mowers, birds things that usually keep me awake. Not today the pain, numbness, the tingling is overwhelming.  My eye aching and the blurred vision was too much to take today.  Is this how summer is supposed to be, where is my tan? Pain is exhausting, real exhaustion. I was a true spoonie today!

Just because I do not look sick does not mean anything. The pain is so real and intense I wonder why others can not see it. This is not a pity party, this is not searching for sympathy. This is nothing more than the reality of a relapse with MS. This is a day that I may seem fine on the outside yet inside my body it twisted in pain. Today there was no tiara.

Micheal Phleps looks like ME

cup·ping

ˈkəpiNG/

noun

noun: cupping

1. (in Chinese medicine) a therapy in which heated glass cups are applied to the skin along the meridians of the body, creating suction as a way of stimulating the flow of energy.

It is not a new therapy actually it is over 3,000 years old but Michael PHELPS - Olympic | United States of America does it and people go crazy! Fact I have been doing cupping for about 4 years now. When I was doing it years ago a woman handed me a card for spousal abuse telling me I was not alone and there was help for me. I was yelling to her “No No it is a treatment”. I do not think she understood what I meant though.

I went to a massage therapist years ago who tried to work my back for the aches of surgery and my arm from Lymphedema  and Axillary Web Syndrome (Cording) . Patrick Fuller took one look and calming told me I was a mess, which I already knew. He suggested cupping, I had seen many friends getting this so I figured -why not, it won’t hurt (or will it). My back as destroyed from surgeries and having my breast removed, one arm has cording the other lymphedema so I just wanted relief. Yes, I wear my sleeve but this is life long and needs maintaining.  The cupping I do is when they light the glass jars and stick them on, he leaves them there for about 15 minutes. I sleep while they are on. They can apply them and pump them on although I do not like that style as much, I think most athletes do this type. 

Photo credit www.themollyproject.org

Cupping gets the blood flowing and lymph system moving which can only help in lymphedma right? When you have cording the pain from the twisted “cord” is so intense you want relief but relief is popping that cord OUCH. What cupping does is loosen the webbing so the massage therapist can work it out with ease. From medication and surgeries your body harbors so much toxins, cupping releases them from your body. Now add MS to my mixed bag. Cupping decreases my pain, helps with digestive issues, increase blood flow and circulation (ummmm so important), and detoxification. It WORKS! After a session I want to schedule another so I can still feel pretty good. The trick is keeping up with it. This for me is like taking my medication I have to stay on top of it.

My family was not a believer so my 16 year old son needed his back worked from running he had a horrible knot. Patrick was working on him when he felt it, he told Ben he could scrap the knot out which was going to be painful and take a long time to release or he could get cupped. Ben choose cupping and he loved it. The pressure is relaxing and soothing. There is no pain involved and when he was done Ben felt amazing, He made a comment that he felt like he was standing taller and he was! See the cupping broke the knot up and relaxed his muscles so when he stood he was not hunching in pain. Ben was sold!

Now I know everyone is reading about the swimmers and gymnasts and other athletes doing this so they want to try it. You should for sure but my advice is to make sure the person you choose is certified and experienced. This is not for an a newbie to try. ASK YOUR DOCTOR! Please make sure you clear it with them. You will love it but make sure you are doing it right.

I do thank the athletes for drawing attention however if one more person asks me if I am doing “that Michael Phelps” thing I may scream! Next they will all start wearing tiaras…...

FYI the big spot under my tattoo is when my cording starts. When I left I could place my arm down without any pain!

Wisdo

Wisdo-Throughout life people overcome challenges such as becoming a parent, building a home, being diagnosed with an illness, divorce, relocation, parenthood by adoption, retirement and hundreds more. These life challenges often leave people lost, seeking wisdom and support.

Wisdo helps communities to overcome these challenges by creating step by step maps with corresponding wisdom, contributed by community guides under the calling, of “being the guide they wish they’d had.

Technically that is the blurb which sums it up really great. But you all know how I roll right? That is way too tied together for me. I want you all to understand Wisdo from my end. Why when the job as community manager was offered to me I said “YES PLEASE”. When I had my first chat with the founders a sentence jumped out at me that they said to me. Wisdo was the insight I did not know I needed when I needed it. That was clear to me 100%. I was sick of being lost on pages I wanted direction. I can remember when I was first DX and searching all over finding info, reading it on breast cancer that was not even mine. I was completely overwhelmed by this. I just wanted people who have been there to help me and guide me through this shit show.

Wisdo is taking our insight-you and me and placing it on a timeline so when myself or anyone needs the info they get it at that moment not before when they can not process it. Sounds brilliant because it is! When you are dealing being told you have cancer the last thing you need to be reading about is chemo cocktails. You need someone to guide you how to tell your family, friends and even your job. You need to listen and read about how others did it so you can apply that to your life. That is how Wisdo works. You plot your timeline and gather the info you need, then when chemo arrives IF it arrives you get that info at that time. FREAKING amazing.

The trick is gathering all the insight we can from all the people who have been there. Maybe after your DX, treatment or what ever you realize you could have done “x” to make it easier. You know that telling someone else this will help them BEFORE they start. So all you have to do is add an “insight” your wisdom. Wisdo and Insight you do that here on the Beta page in the corner. Go do it, you know you are a badass with so much to offer.

So now you are thinking that is great but I do not have breast cancer. I feel ya I have a lot of life struggles myself I would love to have plotted. Well guess freaking what!? Wisdo has over hundreds of life struggles that we will be launching. MS, divorce going off to college, addiction, HIV/AIDS, adoption, ovarian cancer, lung cancer and many more! I mean what site is doing that? NONE!

The Wisdo team and myself have been going around to make videos of these insights so you can see, hear and read about well life. Check my fanfreakingtastic friend Britteny out and what Sarah Snow has done to the video. This is just the start of many more!

As you see me around the USA making magic this is why! Got something you think we should cover you know I love sharing, message me. Make sure you log into the landing page and you can be updated when we launch. If you have a Facebook you must have a Wisdo. I must say that I can still wear my tiara with Wisdo but my sarcasm and wacky humor may be harder for them to adjust to. Come on who doesn’t love crazy awkward elevator conversations?

HealthEVoices 2016

I am a voice. Wait when did that happen? It still boggles my mind that people read this blog let alone share it wanting sit and chat about it. CRAZY! But this weekend I will travel to Chicago for the HealthEVoices conference and I am pumped up. The first and foremost reasons are these two- Claudia from   My Left Breast and Jen for Booby and the Beast . I have been following both and "talking" basically since my dx so to be able to hug them is epic. No really, the breast cancer community is tight and these woman are like family to me so this is such an opportunity. To learn from them is going to be amazaballs (how does a blogger who talks like this possibly gets into this conference?).

I do ask myself that, why me? I am not only thrilled to be with Jen and Claudia but I am going to listen to  Trevis Gleason  talk. He is an MS advocate, chef and blogger badass. Plus having MS so I am going to no doubt have an incredible connection to him. I can not wait to hear about what he has to offer. The conference has lined up  Tim Cigelske a social media guru what he will offer me for my blog, Wisdo and Lyfebulb I am jumping out of my seat!

Add a little Yoga, keynote speakers and we have a bang out weekend! Janssen is who we are thanking for sending us on this weekend like no other. Putting us all together, with all different illness is pure brilliance. Think about what can be accomplished medically when those with different health issues get together and discuss what is working and not. In addition to working and brainstorming how to build blogs that will not only reach our communities but reach the masses. WOW! WOW! Yes I use caps and exclamation points, it is how I roll.  

So my bag is packed, my ticket is on my phone, agenda is planned, tiara shined and I am ready to meet, shmooze and make friends with this amazing cast of blogger. #Healthevoices2016 here we come!

Cancer is offensive

If you find offense in this how can I possibly accept myself

I could start with I am sorry you are offended but fuck that! Sorry NOT sorry as the youth of today says. I had a picture flagged and removed from Facebook that should not have, it is within the guidelines. But someone found it offensive calling it nudity. It was a reconstructed breast which is FAKE with a prosthetic nipple FAKE again. I try to figure out who would report it and my first thought is someone who has never had cancer or any illness effect them so deeply. So let's start there shall we?

You know what is offensive? Being told you have a choice of having your breast amputated or a lumpectomy that may "deform your breast" that is exactly the words I heard. You have to choose one and which ever you do will change your body and mind for life and you have no choice but to pick one. No one explains how destroyed you will be over this in the end you just have to do it. Offended?? Having plastic tubes come out of you to release fluid from your body that is offensive, humiliating and inhuman. Naked at every appointment having every doctor and nurse look and feel your once private breasts, that is what nudity is now! The fact every woman I talk to spends at some point time crying in the shower because of how cancer destroyed their body as imperfect as it was, is totally offensive. 

I am the one that should be offended

I am offended that my "boob job" did not work and I had to have a 10 hour surgery to get some sort of breasts. Now I know now I did not have to have reconstruction but at the time I thought I would "offend" people without breasts and I did not have the courage to go flat. But that is a different blog post. I am offended that because I did not see these options on other woman I had no idea what  I could do. I am extremely offended that I had to have my nipples removed which I never knew would make me feel so blank. That my body is covered ins scars that remind me daily I had CANCER.

Offended that I am a rag doll now sewn together

Offensive is having your body radiated to make scars, cancer, pain all dissipate just a little but never terminate it completely. I am so offended that I lay naked on a table while a machine burns my skin, I lay there alone because it is too dangerous for others to be there with me. As they close the metal door I am scared and naked in all senses of the word.  Or the people that lose their hair because of chemo as they on the bathroom floor vomiting from the drugs being pumped in them. That is offensive!

Two days after surgery and radiation, this is offensive to me!

Cancer offends us every time we have a scan and we wait anxiously for results that will change our life. I am offended because I know that the answer could mean death which scares me to my core or paranoia which makes me mildly embarrassed.  Cancer is offending me and my friends every time someone is DX metastatic or dies. Why isn't this the most offensive? I am extremely offended that society does not seem to want to acknowledge this and would rather paint a pink world for us to look at where everyone survives and gets a boob job. I am offended that they took my color pink and made it about cancer, a color is not a disease. 

Cancer killed this beautiful friend, that is where people should be offended. 

I am so offended that people do not take the the time to understand that mastectomy pictures, nipple tattoo, nipple prosthetic on a fake breast are healing. When we see the image we see our self then we realize we are not alone.  In that image we are all the same. We see that we can get to the next step that the surgical glue goes away and somewhere in there we are still us, a new creation yet the same. Looking at these takes the scary out just a little helping us prepare for what we need to do next. 

I am saddened and offended that I now have fake nipple and breasts both with no feeling

If you had cancer and these offend you than couldn't you just move on? Just like we all handle cancer treatment different we need to respect how we heal from it. Maybe you are offended about the doctor dancing through her mastectomy did it occur to you to find out why she needed that? That person sobbing every day does she offend you? It is how she is healing because her personal life is a mess on top of cancer. That girl that wore 6 inch stilettos through her surgeries and treatments-that gave her the courage to stand tall during it and not let her family see her fall. And those images that you find offensive and consider them nudity.......they are helping people survive an incredibly debilitating disease. By calling them offensive you are saying that they are and only hurting them more. Was that your mission?  If we do not accept these images how can we accept ourselves and move pass what is happening to our bodies?

I really thought we were pass this but apparently not. My 15 year old son does not like when I post the images because well he is 15 and is worried that someone may hurt my feelings. But he respects them and knows they help a lot of people. My 13 year old is proud that we all have the courage to post them because he sees strength. Neither see sex or nudity or are offended. I leave you with this if two  teenage boys can respect and see the truth in them why can't others? 

Laughing is not offensive but sitting there with tubes, amputated breasts and the fear they did not get all the cancer is by far offensive

Cancer and Nutrition a Lyfebulb Social Event

When I was diagnosed with cancer it was doctor appointments out my ears. The oncologist, the breast care and the plastic surgeon. No one ever mentioned my lifestyle and how I ate or exercised. Maybe my fabulous before cancer body told them I knew this already. BLAHAHAAH we know that is not true. Cancer brings stress and if you deny this then maybe you are a robot. Some people when they are stressed over eat some under eat either way it is not healthy. Some can work out to relieve the tension some can not even get out of bed. Clearly we need some help here. Yes my cancer center has a nutritionist but no one made that appointment for me, seems to me it should just happen with any serious or chronic illness right? I have always believed that food fuels us from both the health aspect and the emotional. This is the time we need both. 

 LyfeBulb hosted a Social Event to bring cancer and nutrition together, yes you read that right. Now let me first say that I in no way shape or form do I  think eating healthy and exercising will cure shit. BUT it will help your body with the fuel it needs to get through treatment, surgery, stress and all the scans.Exercise in any form is good for your mind as well as your fabulous body. I will also say that eating a bag of skittles is bad for you but can be done every now and then if you are eating right, right? The event was at Le Colonial where the food was delicious and healthy and cocktails were yum! They event started with Susan from Savor Health so let's being there.

The idea behind Savor is that while you are undergoing treatment you can use food to nourish your body and mind. There was no talk about curing cancer but using your body with food to help how you feel during this time.  What a great concept?! It matches your cancer with what your body needs and creates meal plans. Again great but here is my but. Why isn't every center using this? I feel like all the hospitals should be offering us this and our insurance should cover the cost. If we feel better from eating healthy our recovery and healing will be greater. This should be offered at all centers and pushed on every patient. Those with metastatic disease can get through chemo better because their body is prepared. Seems like a no brainer to me. Just my 2 cents here.

Next came Professor Robert Thomas who is an oncologist believing in health integrated with chemo. YUP I said that right. He was not telling us that eating broccoli soup was better than chemo he was saying that with chemo and eating what works against your cancer can shrink tumors. Maybe it was bullshit but when he showed the scans it was real. Ok so may the chemo is what did it BUT I think that because your body was feeling good than you were able to take chemo better. Cancernet uk gives you the info you need to see for yourself. When the Professor first got up I was thinking he was going to be stiff and just spew facts and data, it was the opposite. Relaxed, witty and just easy to understand. He did not throw medical terms that we did not understand but things we did and how it helps us. The other thing that the professor was saying is that it is ok to eat that NYC hot dog when you are eating healthy because it will balance it off. Do you see the benefits from listening to him? My posse kept him, his friend Andy and another friend Stefano from Helsinn at the restaurant until they basically threw us out. The professor really listened to our concerns and our life and wanted to us to see how his research is making a difference. We were sold-we also choked him with his tie (I think there maybe pictures). 

Helsinn pharmaceuticals scary right cause it is big pharma and we all know there are blogs on this. You are 100% wrong!!! Helsinn is listening to the research that Dr. Robert Thomas is doing and making products to enhance our health. They are an integrated  company that is using both alternative health with their medications. I have always believed this is how we are going to health faster and make ourselves more comfortable.

You all know I do not sugar coat shit I am not Willy Wonka. This was such an invigorating event seeing not only where health care can go, but from passionate doctors and companies that are trying to make this happen. What if you go to chemo and they do blood work and see what you what are lacking in vitamins and minerals then they give you a meal plan based on your bodies needs. What if then you eat that food and balance yourself? What will the outcome be? I  just want all the best for us, for us to have everything we need to get through this the best we can. I urge you to check into this cause hey you never know and what could it hurt?

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!