And just like that they are gone....

She looked around the room and said something like "next year one of us won't be here. I think it's going to be me".  Mandi said that. And just like that a year later she is gone.

Mandi Hudson died April 11, 2017

Mandi Hudson died April 11, 2017

 

 

I will not talk about my own fear of recurrence I will only discuss what it has been like losing friends at a rapid rate. When I was diagnosed I honestly thought everyone lived that you didn't die from this disease (thanks pink bullshit for that lie). Then I met Lisa Adams via twitter and Annie Goodman and Seporah Raizer and my eyes were opened. I learned that not only cancer can come back but it comes back and attacks and kills. Yes I know I have many friends living through this stage 4 diagnosis 9 years out, 6 years and even 14 years out but what about those who die in a blink. Mandi was at the beach just a few days ago now she is gone just like that.

Seporah Raizer died April 12, 2015

Seporah Raizer died April 12, 2015

Two years ago  MetUp crew decided to stage a die in at LBBC at the exact time I got a call from Mara, Seporah's sister telling me that she was dead. Ironic that she was one of the 113 that died that day as her friends were making a strong statement-actually it's so much more than a statement it is reality. This is something I feel society is turning their back to. 113 people dying daily is an epidemic, it is a crisis, it needs attention ASAP not “making advances” . How does 41,070 men and women dying this year not make headlines??

Jodie Lanchantin died October 27, 2016

Jodie Lanchantin died October 27, 2016

 

Last year I went to LBBC mostly for Seporah because I wanted to honor her by continuing to be her voice.  I went to the Die In and even spoke about just that. About how I may not be stage 4 but I am mad, sad and demanding more for my friends who are. Our brilliant friend Mandi was there as was my sassy friend Jodie. Honestly, we had a blast! Laughing until we hurt and making memories for life. Good thing because they are both gone now. Mandi’s words haunt me for this year’s conference to the point I am not sure I can go.

 

When will it stop? When will we stop being from dying? I just don't understand why people keep dying. Where is the fucking cure we are all racing for? I know there has been advances in treatment but frankly, that's horse shit. If you were Jodie's mom or son or husband wouldn't you demand more? If you were Mandi's husband wouldn't you expect these advances to save her life? Let me explain that some of these fabulous people are not dying in a hospital bed, sometimes they are at the beach one day and gone the next. They are out with their children and have a heart attack. They are doing what they love and a blog clot takes over. When they die it does not say "metastatic cancer" it will say heart failure, liver failure, organ failure, blog clot. So how do they count? How is their death even measured? Sometimes I feel like people don't care unless it happens to them, I want that not to be true but I wonder.


Today I sit and cry at the death of a friend again. It does not get easier ever it gets worse. I want more for them for their families and for all my stage 4 friends living with this illness and dying for a cure. Do you want real numbers from someone living with this? Go read Stick it to Stage 4  and let Susan explain what a day is like.  I actually can't count on my hands how many people I know that  have died in the last two weeks, don't you find that ridiculous and heart breaking all at once?!?  I do. No tiara today nothing but a girl who had cancer and is trying to understand why she is  watching her friends die.

Photo credit The Molly Project

Will MonaLisa Touch make me smile again?

Two women with two different breast cancer stories, both wanting more normalcy after their treatment has “ended.” This blog is about their open and honest experiences with their sexual health after going through breast cancer treatment, surgery, and the aftermath that cancer leaves behind. Lisa Frost and Ann Marie Otis became fabulous friends through Stupid Dumb Breast Cancer and work together to advocate for a change in the breast cancer community.  This is both of their stories:.

 

Lisa tells her side…

There are some things that you expect to happen when you are going through breast cancer treatment.  For instance, when you are receiving chemotherapy you know that you will lose your hair. It is devastating, but temporary and expected. When you have a mastectomy you know there will be pain and scarring. When you go through radiation you know that there is the potential for skin burns. When I had my ovaries removed, I knew that I would go into menopause. Unfortunately, there are side effects from breast cancer that I wasn’t aware of or expecting. I knew that menopause meant no more periods and that I could no longer get pregnant. I was completely fine with that. I also knew that there was the possibility of mood changes and hot flashes. I most definitely experienced the hot flashes that were incredibly annoying, but I knew that those would be temporary as well. The one side effect that I was not expecting and that has been so disappointing is the change in my ability to be intimate with my husband.

 

Menopause on its own can cause significant changes in gynecological health. The lack of estrogen to the vaginal walls creates something technically called atrophy. In layman’s terms, this means thinning and shortening of the walls and the vaginal canal. There is decreased blood flow and lubrication. If you add having your ovaries removed as well as adding an aromatase inhibitor (prevents even further estrogen production), then your symptoms can be even more overwhelming. Symptoms vary from person to person, but what this generally means for women is painful intercourse. In some cases, it is agonizing. There is true, life-altering pain--there is burning and soreness. I am in the medical field so looking at this situation from a healthcare perspective, I can list all the facts; but as a woman, wife, and breast cancer survivor I can tell you from my own personal experience that the inability to get intimate with my husband of so many years  was the most heartbreaking.

 

I realize that as a breast cancer survivor I am privileged to be alive, but I honestly was never prepared that not being able to be intimate with my husband would be the longest lasting problem that I had to face after cancer. There does come a point when after cancer you try to start living your life as normally as possible, and painful intercourse was not something that I was expecting to have to deal with. This is also a problem that a lot of women do not want to talk about. It is embarrassing and extremely personal, but it is also very common. As a woman with estrogen positive cancer, hormone replacements are not an option for me, not even vaginal hormones. Loss of lubrication seems like it would be easy to deal with, right? Well it isn’t as easy as it sounds. I have talked with my gynecologist, and she suggested coconut oil. I have tried many different lubricating gels/liquids/solids that are on the market and while they do help somewhat they don’t help as much as I would like them to. I continue to experience pain, burning, and yes, even bleeding after intercourse.

 

My husband and I have been through so much together. We are actually one of those fortunate couples where cancer brought us closer together. It breaks my heart that he is hesitant to come near me because he knows how painful it is for me. It is difficult to hide the look of discomfort on one’s face during intimate moments.  What husband wants to see his wife in pain when it is supposed to be something that brings you both pleasure? This past year, at my yearly gynecologist check-up, my doctor mentioned something new that has been shown to significantly improve vaginal health. She told me about the new laser treatment technology called the MonaLisa Touch. It is a series of three treatments that has been shown to renew the vaginal tissue and has been very successful in improving the sex lives of many breast cancer survivors out there. I was so excited that there might actually be something out there that can help me. Only a year ago I was convinced that there wasn’t anything that could help make intercourse less painful for me, but now I have hope.

 

Can I add my two cents? (This is AnnMarie, BTW)

I remember when I was diagnosed with breast cancer, and I made this comment, “I can not wait until I can just be done with this.”  What an actual joke that was! I was not at all prepared for the side effects that my body was left with. I will skip right to the part that left my husband and I in an intimate hell. I, like many with breast cancer, had a full hysterectomy because of cysts and things that were growing. Almost right after the surgery the nurse asked me if I was experiencing hot flashes or any symptoms, and I was like, “Huh?” Could it happen that fast? The truth is YES! You are what I like to call violently shoved into menopause. That being said, you miss the gradual ease into menopause. That is the luxury that non-cancer women get. This full throttle is really no joke. I was still coping with my external body changes, and now had to deal with the hormonal as well.

 

Intercourse. Wow! The first time was truthfully sheet grabbing painful. I had tears streaming down my face. I know that there are many other things to keep the love alive, I get it, however, this is happening to young women and older ones that are still active! Let’s face it, does it matter your age if you want to be close to your lover as you should be?  I hate that this is just another thing we end up feeling like cancer took from us, we want it back. In saying that, I am scared of another procedure. I am sick of having them. The anxiety of all the tests, the stress, the worry. I know that others feel this way too. The anguish of yet another invasive treatment done to them without really knowing what it is. With that said, MonaLisa Touch sounds way too good not to explore more, especially considering that the company has 15 published studies to verify that it actually works, not to mention numerous ongoing studies.

 

Here is the thing though, before we connected with the brand and our doctors, we really hadn’t heard anything about the treatment, which makes me wonder, “Have you heard about it before?”  Is anyone talking about this? Better yet, has anyone reading this already tried MonaLisa Touch? I want to talk to as many people as I can about this procedure so I can hear how it helped them. I am going to look into this treatment for me. Let’s all work to get our sexy back in 2017!

This blog is sponsored by Mona Lisa Touch and we are thrilled to bring it to you. 

Posted on January 18, 2017 .

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.

Posted on September 15, 2016 .

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

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!  

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

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 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  

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!

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. 

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

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  

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