Perspective

It's been forever since I've written and I'm not really sure why I guess I am busy, covid, kids-ya know life. I've been dancing with NED for  a month now and it's been truly surreal. I do feel as though so I got a bit of my life back almost like I feel alive again. Does that mean I don't think about cancer and what it's done to me the past 8 years absofuckinglutly not. The reality is it still looming in the background. Through this ridiculous pandemic that's going on, no hate I know it's a thing it just took it in a different way because ya know-Cancer is still part of my life. I found myself like “screw you covid- I had cancer I sure as fuck am not going to let covid kill me”. I think a lot of us in the cancer world found ourselves saying that. But I started to think what the hell has happened these past 8 years. So much has happened and truthfully it is all on cancer. 

It all hit me last night when I had a headache. I've always had headaches. I haven't had a brain MRI in a long time and it doesn't usually stress me out but for some reason last night it did. What people don't realize is when you have a PET scan it is from your neck to about your upper thigh -does not hit your brain.  So I started to freak out if they missed my brain and it's headache is really brain METS. Now two things here first of all I know that many people find their brain METS this way. I totally get it, that's not what this blog post is about though. This is about the fact that every ache or pain will always be “could it be cancer coming back”. Like I'm serious every pain I don't care if it's a hangnail or you stub your toe and all the sudden you have extreme pain in your foot after having a cancer diagnosis the fear of it coming back never goes away. 

Maybe I'm feeling this way because my 8-year anniversary is coming up. Next week will be 8 years that I had my lumpectomy and they told me “it's nothing, don't stress about it”. So I went to that doctor's appointment by myself to get the results. I remember it like it was yesterday seeing my doctor walking in the door and saying I wish you weren't my first appointment. I knew right away what was going to happen so I looked at her and said “why because it's cancer?”. Funny cause we all sort of have that feeling whether we have a biopsy or testing that it could be cancer but no matter what you think just maybe it is nothing. But deep down you know. After hearing those words the rest is like a dream big nasty fucking dream.  You hope you're going to wake up from that nasty dream but then you realise, nope here to stay. I remember having the attitude that I will just get this shit over with and I can get on with my life. How freaking naive I was. I now know that cancer does not leave you but you can learn to live with the stupid dumb fool.  My perspective changed so much. 

My very close friends now I'm a worrier it's just how I am. The funny thing is I worry more about other people.  I can make a whole story in my head about how someone simply going to work, a drive they do everyday; hit a bump, car flipped, went into a ravine, they can't get to their phone and they're going to die because no one knows where they are-in a heartbeat. I just worry about others, it's truly who I am. I don't necessarily worry about myself. Part of that is because I have faced death so many times I just don't think about it. Living with depression and suicidal thoughts I had many a moment where I just was like ok cancer just kill me and let’s be done. That way people would not worry about me. I had a hard time letting my friends and family worried about me during my diagnosis. I was the worrier who took care of them. I didn't like it being flipped onto me. It was very hard for me to let them take care of me. After all, how many times did they all tell me how strong I was? This isn't a dig it is just hard to be taken care of when you are “strong”.  I realize that being strong is about getting help. Again my perspective changed. 

Cancer affects you physically there is no doubt there we can see it. They forgot to send the memo about cancer and the mind fuck it does to you. Self body image is screwed up, depression/anxiety is peaked, PTSD is no joke, anger mixed with happiness is confusing- just to name a few. Cancer is scary as hell and there is no rule book about it. I learned that every emotion is valid and ok for you to have. I went and got therapy, support groups and kept SDBC going for me. SDBC is just as much my therapy as it is for those asking questions. I started to see those “cancer free” moments and I held them. The times when I am laughing, singing, cooking and there is not one single cancer thought in my head. I had to change my perspective and embrace these moments. 

Now one thing remained the same. This tiara has never left me. Maybe it needed polishing or to be straightened but it remains. I am not any stronger or braver than anyone else going through this. I am just a North Side, Italian girl who has changed her perspective but is bringing herself back-tiara, stilettos and all.

Tell It Like It Is… Telling My Kids I Had Cancer



The day I was diagnosed is a day I will never forget. Countless things were running through my mind and on the list was how was I going to tell my family -- especially my children. When I first became a mom, I knew I had to learn how to get through the diaper rashes, the terrible twos, potty training and the teenage years. Never did I think I would have to learn how to tell my kids I had cancer.

I came home after my appointment to my father watching my then 4 year old son. I revealed to my dad that I had cancer and he started to cry. I asked him to please stop, that this was my cancer and I was not ready to cry so he needed to stop. He mumbled that he needed to meet someone (which I knew was a lie), but I was relieved he was leaving. I was too scared I was going to break down. When he left, I’m sure he cried in his car after hearing his baby daughter had cancer. Throughout my process, he was the strongest I had ever seen him. When I needed him, he was strong.

The day went on like I was living it but not there. Telling your child you have cancer is the scariest thing to do because there is no definite that you are going to be ok. You instantly rip their childhood away, you strip them of innocence and enter them into a world of fear. How would I find the words and what should I say? Having four children, you learn that each one handles things differently, so I knew I needed to be generic in my words yet at the same time my reactions needed to be individualized so each child knew I was always going to be there for them. I knew my then 14 year old was going to handle it very differently than my 4 year old. Going into the conversation I felt like a liar because I told them it was nothing when I went into the lumpectomy. I wanted to tell them the news in a way that they understood I was telling them what the doctors told us. 

I was not going to wait to tell the kids. I wanted to be up front and just let it out. That night after dinner we sat all four down and told them. There were tears, anger, fear and some naughty words said -- “stupid dumb breast cancer” from the 4 year old -- but we talked. The tears came from the child who was 6 and unsure what cancer meant. The anger from the 13 year old who yelled that we told him I was ok. Why us? Was I going to die and how can he ever eat this meal again without thinking of this moment? The fear from the 11 year old worries what will happen to his mommy. Can he get breast cancer cause he breastfeed? We answered the questions and explained that we do not have all the answers because this is all new to us, but as we know they will know. That we will not lie, you can not get breast cancer from breast feeding and that we were scared too. 

Saying you have cancer out loud made it more real every time I told someone it felt like a punch in the gut. Keeping it simple and understanding that it is ok to be scared and angry even when you tell people makes it easier. Embraced the fact that like my emotions changed, others reactions will too. They could not understand what I was going through yet they were hurt and scared in their own way. But with my diagnosis came an entire new world-- the cancer world. I looked to them for support, education and advice. They gave me tips on how to tell my work or the school. Together they explained how they told their family. I gathered all the info they had and took a little of everyone’s to find mine. The best way to do handle this is your way. There is no right or wrong way to tell your family. Find your own way and don’t be pressured by how other have told their families-- this is your cancer no one else’s.  Not everyone has a shiny tiara to keep straight.

Bags of Inspiration

Donate a "Bag of Inspiration" In Honor of Your Loved One

For $35 you can donate a Bag of Inspiration to a cancer patient receiving treatments at Upstate Cancer Research Center. Each bag contains:

Warm Blanket
Acrylic Tumbler with lid and straw
Knit Hat
Bandana
Buddha Board
Aveeno
Candy
Chapstick
Queasy Drops
Activity Book
Markers
Faceplants warm Cozy Mermaid Slippers

When you donate a bag, your loved one’s name will go on the top of an inspiration letter that will go in each bag.  Or if you wish you can email your own letter to be included in the bag. 

Please inbox us for instructions on how to donate a bag to honor your loved one.

Sometimes when you are needing a little help it pops into your life. Laurie and I grew up in the same community only years later to connect cause of stupid dumb breast cancer. Then again when she was slammed with a Stage 4 diagnosis. I missed doing my bravery bags but no time. BAM Laurie has the drive, passion and reason to start this up. It is now called “Bags of Inspiration” and we are ready for action! Please read Laurie’s story…

Hello, My name is Laurie Sutherland and I’d like to tell you a little bit about myself.  I am 52 years old and I have been married to my wonderful husband Jim for 32 years. We have 3 incredible kids (adults) that we are very proud of.  In 2009 our lives were interrupted when I was diagnosed with Breast Cancer. I went through several major surgeries and although my body was drastically changed, my outlook was positive.  

At the time my friend introduced me to her wonderful friend Ann Marie.  Ann Marie is the founder of Stupid Dumb Breast Cancer and like most breast cancer fighters/survivors there was an immediate connection, sort of like a sisterhood. I watched Ann Marie build Stupid Dumb Breast Cancer into a place where everyone regardless of what type of cancer could read, learn, voice their opinion, ask for advice etc. She amazed me, her strength was superwoman like! Ann Marie helped me recover in so many ways, but first and foremost she was a friend that I could count on. 

Now I’ll take you to this year!  In May I had a routine CT Scan as Pancreatic Cancer runs ramped in my family.  I was expecting the results to be negative as I wasn’t experiencing any symptoms.  Much to my surprise I received a call from my Dr. advising me that my results showed some spots on my liver. I had a biopsy and 3 days later I got the devasting news that I had Stage IV Metastatic Breast Cancer in my liver. WHAT??? How could this be?? I have been cancer free for 10 years!  Well it is what is, I can’t change it, so I put my BIG girl pants on and decided to FIGHT this BEAST! After the dust somewhat settled (it never will completely settle) I reached out to Ann Marie and as always, she was right there for me for whatever I needed.

My first day of Chemotherapy was scary (I didn’t have chemo the first time), but I was met with an incredible team at Upstate Cancer Center. When I checked in for treatment, I was given a beautiful basket with items that I would use throughout my fight.  I was so INSPIRED by this! After a couple of weeks, I reached out to Ann Marie and told her that I had been up all night thinking about ways that I could give back to other cancer patients. I came up with an idea of “Bags of Inspiration”, and Ann Marie’s response was “We are cut from the same cloth”, I too used to do bags.  Her bags were called “Bravery Bags”. And so, “Bags of Inspiration/Bravery Bags” were back in full force! 

If someone was to ask me why I do these bags, I would have to tell you that it gives me a sense of peace, satisfaction that we are helping other cancer patients, pride in knowing that we are making a difference. One of the most amazing things I have found throughout this process is how generous people and companies truly are.  Ann Marie and I are receiving boxes daily (we know the delivery drivers by name – lol).  

I would like to take a moment to THANK, not only everyone who has purchased items through our Amazon Wish List but to the list of our ever-growing companies listed below who have generously donated items to fill our bags. 

Faceplant Dreams –donated 200 of their warmest bedroom booties
Visit them at www.faceplantdreams.com

PJ Harlow – donated 10 of their softest silk pillowcases
Visit them at www.pjharlow.com

Buddha Board – donated 210 Mini Buddha Boards
Visit them at www.buddhaboard.com

MJD Associates
www.mjdcorp.com 

Showing UP

“Thanks for inviting me to party/book club/dinner/lunch/event. I will try my best”

The response I usually get is “You have to come” or “Why wouldn’t you?”.  I wonder if people really want the truth. About 7 years ago I would not miss a thing, ever.  I do not nor have I never needed anything to loosen up, be ridiculous and have a blast. Not to say I did not partake in some things to enhance the experience. I just did not require it. So going out was always fun-pure fun. So why is it so hard to show up now?

A day in the life of someone living with relapsing MS and what it is like to show up……

After a sleepless nights sleep I lay there, usually on the couch it is the most comfortable. I lay there trying to assess the amount of pain and where it will be the worse. Maybe my back today which will make sitting up difficult and breathing impossible. Could be the throbbing cramps in my legs that will make it hard to swing them over to stand. Or possibly my feet and the pins and needles yet numbness making those first morning steps shear terror. Well time to get up make lunches, breakfast and get ready, here goes nothing.

Oh standing up from laying means I need to gain my balance first. I stumble and wince as I make my way to the bathroom then to the kitchen.Every step is hard and I fight to show the kids what pain I am in but they are not fooled.  I grasp the walls because my brain is not telling my feet to move and I am looking like a drunken sailor. I have stumbled and almost fallen twice already. I heat my fishbellie (corn bag) and place the hot bag on my feet or leg or back. AHHHH that is perfect. Coffee, a little snack then 11 different pills and vitamins for breakfast. I say goodbye to my humans and then the nausea sets in from the meds. It is so bad I have to use some CBD to try to gain balance. With the pain that feels like my muscles are not there, the nausea and my “dead leg” I get on the treadmill. Yes the treadmill. If it is a good day I am a speed walker, a great day I run but this day I walk slow with no incline and grasping the rails. Why you ask? Because no exercise means stiff joints and even more pain. After thirty minutes I am done. Seven years ago I worked out for 2 hours a day, this wrecks me to think. The mental part of a chronic illness sometimes out weighs the physical.

I get ready for the day, shower and log on to work. Here is where I am lucky. I do not have to go to an office. My work is virtual, my meetings could be done in my pjs sometimes with no pants. Thank you Wisdo for that. It still is mentally exhausting, brain fog sets in as the day progresses. Some of my meds take effect by making uncontrollably tired at 2pm. I fight to stay awake but realize I must sleep for even 15 minutes. Kids arrive home and I can not move,my body is mad at me everything hurts especially my side radiating to my back. Hurts to sit, to stand, to be. I push myself to make dinner, kids clean up I can not stand another minute. But first I take those 11 pills again. The white one burns as it goes does no matter how much water I take and the after taste is like death. This is my reality.

I was invited to that “thing” and now I must decide can I handle it? Loud crowds can stress my thinking out. My eyesight is terrible so night driving can be difficult. Every single step is excruciating. If I sit the pressure from my back is so painful it burns, if I stand my pins and needles are worse. But maybe my mood will lift so I go. I take myself and go. I laugh with everyone, cracks some jokes and smile. Oh shit sorry I cannot have a glass of wine my medication says no alcohol. I get asked “may just one”, no even one can causes damage. I get the look, the don’t be so dramatic look. If only. I have been here only an hour but the pain in my back is intense and I can not walk.I am both sad and embarrassed. I say goodbye and people wonder why I am leaving. I get asked “Isn’t there something I could take?”, if there was a magic pill I would. Trust me showing up was hard walking out is harder. I feel like a failure. My body has failed me.

Some days I say no, I just can not. Some days I do not show up, Some days the cramps in my legs are crippling. Some days I can not move my hands.Some days I can not think and forming words is impossible. Some days walking is more work than I ever thoughts. Some days I just can not keep that tiara on.

But some days I just show up.

Your body your mind

There is this saying “your body listens to your mind careful what you say”. The issue is when you had an illness like cancer your body says a lot. What should you listen to and what should you ignore? Who do we call and will they listen? These are real questions and concerns we have. I have found myself not telling what is going on because I do not want to seem like a hypochondriac, plus that look. You know the “omg is she for real?” look. I have for the past 3 years try to deal with a lot of my health issues on my own, mostly because I do not want to seem like I am crying wolf. The truth is I am in pain, constant pain. When I write it all out I think “what the hell is wrong with this person?”. I have told my neuro some, a little to my gastro, some to my oncologist, a little to my breast care doc and a lot to my GP but I held most in. Plus you see where I am coming from-which doctor and how much? Not to mention no one had an answer.

Recently I could not take any more “false positive” results, what does that even mean? The “there is something there, we just do not know what” comments were too much. I was sick of the pain with no explanation. So I sought out a new doctor that looked at everything. Heidi Puc is an integrated doctor. Now chill let’s look at the word integrated, it means combining allopathic and complementary therapies. I needed a change and she was it. I sat with her for 2 hours and she combed my case and listened to me. I mean listened to every ache, pain, twitch and tingle. I am curious why more doctors do not do that. She even had about 50 symptoms to ask me about. I feel like I am getting the answers.

Fear-that is a huge issue. We are so scared to get an answer or a DX we do not go. The anxiety and stress of knowing all too well how an illness can change you is mounding. The truth is the unknown is just as scary if not worse. It is time to take that fear and say  “bite me”. We can run from fear or run through it. While I am not a runner I am sick of letting fear consume me.

I am being tested and scanned like a mission in the task force. I am slowly getting answers. What is my point here’? Stop being worried about what the doctor may think or how you may look. Talk to your physician, if you can not fire them and get another. The aftermath of cancer or any illness of that severity is extreme we need to be our own advocate. Now I am not telling you to go to the doctor for every sniffle or hangnail. However issues that are persistent or nagging need attention, go I urge you go.

So while my doctors all listen to me and try to find the source of my pain I will try different meds to help. I will get blood draws and scans. But I will not be quiet any more. This is my body and I am tired of living in fear of it. Someone grab my tiara, I ready to face it head one!

My Other Side of Breast Cancer By Marianne Sarcich

This is a guest blog post by Marianne Sarcich

The other side of breast cancer treatment. That’s where I am now. And grateful to be here. But every moment I’m here, I realize how little I understood about recovering from breast cancer, or any cancer for that matter. Do you know that I truly believed as I headed into my mastectomy on September 26, 2016, that I would be ‘good to go’ by Thanksgiving? And that all of this would be behind me?

Are you laughing with me? Or should I say at me? Go ahead. I’m laughing. If you’ve cancered, you know that is not even close to being the case for most of us. Here I am, just over two years out from surgery, and I am still dealing with post-cancer anxiety. And, I didn’t even know it was a thing that could be headed my way.

The anxiety didn’t hit me until my oncologist told me I was NED -- no evidence of disease. That was late October 2016. Shortly after that appointment, I began to feel it, the fear, the panic. How did she know they got it all? What if I still had breast cancer? What if I get it again? What if she’s wrong?

I directed that panic into cleaning up my eating and my kitchen. Anyone who knows me knows I’ve been a pretty clean eater for some time. But with the anxiety raging that suddenly wasn’t good enough anymore. I needed to ditch every preservative. Every toxin. And, I needed to do it NOW.

And don’t get me started on the plastics in my kitchen. They’re gone now, as you can imagine. Replaced with glass containers. But, one evening that December, I literally was on the edge of a huge panic attack as I poured my daughter’s nightly Zyrtec into a, oh yes, plastic cup. The security of having a clean kitchen suddenly vanished. I remember turning around in my kitchen and seeing all the other plastics that somehow I had missed -- the salad in the plastic container, the baby carrots in the plastic bag. I couldn’t take it. I walked out. Because a clean kitchen was my shield, and it was just shattered. At least, according to my anxiety. And we all know that it can trigger irrational thinking.

I worked very hard on managing my anxiety as soon as it hit. In fact, managing my anxiety became my part time, sometimes full time job. I turned to holistic tools and booked my week with as many as possible. Support group. One-on-one counseling. Art therapy. Writing workshops. Yoga. Exercise. Acupuncture. Reiki. Mindfulness. Meditation. And even gratitude work. My dance card was full for months and months.

All of that did help me. Those are powerful tools. But the progress I made using them was shredded in August 2017 when I found out I needed a uterine biopsy. That's when my anxiety became monstrous, and I was almost not functional. I started taking Lexapro, which I still take. But of course it takes time to take effect. So, I took Ativan along with the Lexapro and drug-dozed through the worst anxiety I’ve ever experienced. Thank goodness that biopsy came back negative. So I could focus once more on healing and becoming me again.

Some time that Fall I became aware of just how extremely healing connecting with others in the breast cancer community is to me. There is nothing like talking with someone who absolutely understands your experience and what you feel. So, in January 2018 I created a peer mentor group on Facebook called In This Together Philly Wilmington.

Working on this group is saving me. Connecting others to each other and to the resources they need plus meeting them for group outings...it is like gold to me and managing my anxiety. It calms me and releases me to breathe just a little more freely.

Perhaps it’s because it gives me the feeling of putting some sort of order on the chaos that is cancer. Perhaps it’s because it makes me feel as if I’m protecting people from some of the pitfalls I faced. Perhaps it’s because of the incredible love and compassion that flows throughout the group. It doesn’t really matter why. My group just is my anxiety healer. My new shield that I carry with me.

Today, as I write this, yes, I still feel the anxiety. But it is no longer front and center and defining my life. It’s been back burnered. And hopefully it will one day be gone. And I’m more engaged in my own life now and with the community than I’ve ever been. I’m doing more living in the moment and not in my head where it can still be very dark. So, for me, for now, my other side of cancer lies with healing through deeply engaging. That is my path now.

Growing Stronger Together

Whenever I hear a group of advocates says “I found my tribe” I smile cause that is the best feeling. Then I think who the hell is my tribe? I have so many breast cancer connections that I often find comfort there. But is that my tribe? That feeling of “oh my gwad they truly understand”. Sure they are my breasties that I would be lost without that is factual. See, I was always the one that had such an array of friends I did not know which group was really mine. Yeah I hung with the jocks thanks to my BFF Alissa, hung with the stoners thanks to my HS boyfriend and the preppy crew, and even hung with the smarties. I never had a tribe I just had people. The same thing happened in my adult pre-stupid dumb breast cancer life, I love to just have an enormous group of peeps around me. Then I was diagnosed with cancer….dun dun dun. I realized fast who would be there, who would cheer me on and who would leave. Honestly, at the time, I was pissed but now I get it and it actually helped me. My large circle got smaller and I needed that.

As an advocate, you look for those who understand your mission, believe in the cause and want change. So clearly I could find some in the breast cancer community. Like all other advocacy, the BC people divide up by type, stage, and even gender. Fran,kly, it was confusing to me I am a team player and if I wanted in on the Triple Neg awareness why the hell not? But nonetheless there is a divide but I still found my people there.   We waant real education, real change, and reality checks. I love that!

Then one year my very dear friend Jen from Booby and the Beast told me to apply for HealthEvoices. What the hell is that? I have been to YSC and LBBC aren’t I supposed to stay with my people? But I thought “shit sure I will apply”. I had no idea what to expect none. But Jen was going to be there and I got to meet Uzma, Brandy and Claudia so win win. That year I arrived and meet Marisa striaght away and it was really amazing to connect with her because she was doing such great things in Lupus but I do not have that so I thought no big deal so far. I also forgot to pack underwear but that is a different blog post I suppose.  Bonus was I found fast was that the Janssen and the Tonic team put so much heart into  conference it is impossible to not feel the love they are spilling for us. They care which really made a difference to me. I never once felt anything other than that.

Opening ceremonies I sat in the front with Marissa , I was so eager to hear Jen speak! I was quickly immersed into  the stories being told from the HIV, IBD and many other communities. I remember thinking “WOW there is advocacy all over” And then Chrisa got on stage and she started to speak. She talked about her son who is schizophrenic and what it was like raising him and being his caretaker. She said something that I’ll never ever forget.“Why is it OK and acceptable to give our child chemotherapy if they’re going through cancer. But if a child has a mental illness we all gravel and are shocked when we want to give them medicine“. I sat there sobbing not because of her son but because at that time my son was going through his own mental health issues and we were debating whether to put him on medication. And I thought “she gets me she understands what I’m going through”. We’ve been friends ever since and she added me to an amazing Facebook group. What a connection that was?

Then I applied the following year I thought shoot I had such a great time I would try again. I did not think I would be accepted but I was and I was so freaking happy. I was also there with Wisdo doing videos so it was double fun. And double the amount out of work- I was wearing about three different hats that year. So that was the year that I was told that I had MS. Truth is I  hadn’t really told many people I guess mostly because I didn’t want to admit it -stupid dumb MS. Then I met this guy Dave and he was so full of life, so vibrant and freaking hilarious. He was also in a wheelchair advocating for MS and I was in awe. I thought holy pins and needles I am going to get through this shit show. So I went up to him and I said “hi my name is Annmarie usually blog for breast cancer. But I want you know that I have a MS”  He said something on the lines of “well that sucks”. I thought this is my guy I love this dude. And we been friends ever since. Together we grow!

So it brings me to this year in this very long post that you probably haven’t even gotten to the end of them are wondering why she wrote it so long. I couldn’t have been more thrilled to go and  the anticipation was already leading up to it. Everybody was messaging each other and we couldn’t wait to be around one another. The year before I connected with Michelle  mostly because she sat next to me during open mic night and crack jokes. She has an extremely inappropriate sense of humor which of course I gravitated towards. So I couldn’t wait to see her. The cancer community is not just BC which is pretty freaking awesome too because I may have never met my little brother Kyle who runs Check 15. See I was supposed to go to the Cancer Summit and I ended up in the mental health summit which was fine but it made me think. I watched the Twitter feed and the Instagram feed and saw all the pictures of the different groups together -the RA, diabetes and IBD and many many. I sort of suck for not naming all the advocates, so do not be an ass check the link to HEV and read some! 

And I had a revelation. Honestly it brought me to tears. I don’t have RA and I don’t have diabetes I don’t have a lBD and I’m not HIV positive. I am a hot ass mess yes but with MS and breast cancer and a whole lot of mental health. But the truth is I am a part of all those groups even the ones of illnesses I don’t have. This is my tribe. It brought me to tears and I don’t cry easily so you know I had to be serious. Being a part of healthy voices and what Janseen has created is unbelievable to me and I am so thankful to them, they care I swear they do. I miss them come Monday when the conference is over, I worry that they are ok. I miss our selfie‘s and our laughs. And our extremely inappropriate humor sense of humor. Gabe Howard my have seen that I do not have nipples it was educational even though it possibly made a few uncomfortable...ummmm the other  Gabe. Doesn’t matter that we don’t all share the same illness or nipples or testicles. what matters is that were advocating for a change and for people to understand us. I have to say that I’m sick of preaching to the breast cancer choir they’ve heard it they know it and they’ve lived it. It’s time to preach outside my circle they have them understand what I’m going through. At a conference like this I can connect with advocates for each other but I walked away with new friends I walked away with people that I consider my family. I walked away knowing that these people advocate not just for me but with me. Knowing that if I looked like I wa sin pain at 1am they check, Rachel. 

 Alycia Bridges I really do look up to you

When you ask me who is my tribe is this is them! They are eclectic, they are amazing and they are empowering. They are there is you have a PTSD break down if you have and sister with cancer, if you need to talk about sex or lack of and most of all you do not have to pretend with them or share a late night pizza.  It has been an amazing few years with this group of misfits and I have been honored to be a part. And they like me they really like me!!! The bonus NONE  of them will take my tiara well maybe Robert.

Tell me what you need

The other day a friend sent me a text asking both TFO and I “what is the one thing we wanted from people when you were diagnosed?”. I loved that she asked this almost 6 years later not because it doesn't matter anymore but because she still cares enough to be thinking about it. That to me says a lot because the truth is that after the DX we still are living through this every damn day. I still have doctor appointments, I still see my scars and I still think about it coming back, so her question meant the world to me. I often post and blog about “what not to say or things people do that they should not” but hardly ever do we talk about what they got right. My good friend really got me thinking, plus I posted it on Facebook to ask the SDBC team because they have all the answers. And the overwhelming response was “show up”, “be there”. Check them out here. I think people are looking for what to bring or what to drop off but honestly we just want to be normal for a fleeting moment. We need that little slice of normalcy when our world is being turned upside down.

The truth is not all the people in your life can make you dinner or take your rotten kids. I learned that from another good friend. One of my BFF’s said to me “Look I can not cook for you and you have too many damn kids so I will take your picture.” At the time I remember thinking “why the hell are we doing this and what the hell are we going to do with them”, well that is all history now. Point is that was what that friend could do for me. Another friend came over and just vacuumed, she said nothing to me just vacuumed. A few of my close friends came by when I was all drugged up and watched crappy movies and laughed and that was wonderful. Some people brought food and took the kids all super awesome. Some stayed away too which I do understand as well but that was for them not for me.

The best thing anyone can do is just be. Be who they are on a regular and not alter that in your life. Maybe that is holding your hand and saying nothing, or dropping off paper products but not staying, or simply taking your kids to school. The fact is when you are going through crap it is really hard to ask for help but you need help so when people just do it the results are a win win. We need so much but require so little. A hug, a hand to hold, a shitty joke to laugh at, inappropriate socks, a cure of cancer-any of those will do. But do something cause doing nothing just hurts. Do not make the person struggling reach out and ask, jump in and be the awesome friend you are. Sometimes they just need their tiara shined, it is that simple.

Pink Party Time

Breast Cancer Awareness Month

What are you aware of? When you walk into the Dollar store and you see that cardboard display of pink crap do you think “well this will save a life”?  Hey everyone news flash …..

MAKE SURE YOU CHECK YOUR BREASTS. GET MAMMOGRAMS AND TALK TO YOUR DOCTOR ABOUT THE RISKS!

There you now do not have to buy any crap and you know that you need to check yourself. But what else do you know? What is the awareness in that ribbon? It is not just self-breast checks and mammos but that is what they want us to think. It is not a pink party but that they push too. 

How about knowing that you may lose your job, your spouse may leave you, you become depressed, some hate their body after, reconstruction can fail, and it sucks! There is nothing positive about breast cancer or cancer NOTHING it is cancer people! Who ever thought that was a thing to be happy through cancer?? I am so confused by that. People want us to be happy, about what? Having our breasts amputated? Is chemo a puke party? Maybe having your skin burned for 33 days is so positively awesome. Wait it must be having a Stage 4 diagnosis, that must be where the fun is at? Now do not get me wrong having a good attitude is one thing but let that person choose when do not shame them into when they should be feeling it. They can be pissed, happy, mad, depressed what the hell ever it is a cancer roller coaster. 

My point? It is ok to be negative this sucks, every step (except that you get to read my blog that is great right?) But companies have taken it upon themselves to market the hell out our cancer, they are selling our disease for profit while we are suffering. I do not know about you but I do not see a penny of that pink ribbon crap, did you? Why are we letting them? Why do we sit back and let them market this while we are still being diagnosed, still dying? 

Did you see gold last month for Pediatric Cancer? Or did you even know Liver Cancer was this month? Who was talking about Mental Health Awareness Month last month? And how many will be wearing purple for Pancreatic Cancer? Why.. because Breast Cancer is marketable! All that “save the tatas”, “Save second base” bullshit. Makes it fun and sexy because Breast Cancer is so much fun and sexy, ummmmm sorry to burst your pink balloon but it is not!  Did it dawn on anyone that slogan sexy crap totally discredits the males that get breast cancer? The fact that over 400 men will die this year from breast cancer should make us turn our heads and want a change.

I was told I should be ashamed of myself for being “negative” and not seeing the other side. Well, screw that! I am not just pissed off they are selling my cancer as a marketing tool I am pissed that my friend who is 15 has DIPG gets only 4% of funding and freaking no attention to a disease that is killing kids, kids! While we market breast cancer because it has to do with breasts! Get over the boob obsession people.. EFF that (watching my language cause my 12-year-old is reading this as I type). I am pissed that every time someone buys some pink crap and thinks they are doing good they are getting lied to while my friend Beth is dying. And truth be told I have a 1 in 3 chance of being metastatic. Those odds suck but keep buying that pink crap.

I will say it again ….I LOVE PINK! Love it, I want to bath in it. For the record, I love when my family and friends wear something like an SDBC shirt or something pink and they do it to support me because they too know what we went through and the truth with the ribbon. I have a pink ribbon tattoo on my foot. But I know very well what is behind that pink ribbon, don’t you want to know too?

Together We Thrive

I sat here and thought and thought about my blog post for HealthEVoices17 which direction to take it in. I could go on and on about everything I learned in the sessions which was a lot. I could discuss how much powerful content Wisdo got by videotaping so many incredible advocates. Or maybe I should write about Janssen and how not only did they pay our expenses but they ate with us, they laughed with us, they cried but they listened to our stories. I am talking really listened, they heard our stories from their heart. I could have also written about The Tonic team and how they made it their mission to make sure we had everything our aching bodies needed. I for sure could have discussed the Impact Fund! WOW just WOW! Maybe I could write about how I stand on things I have not done that in a long time??? HMMMMM......

Then in our closed group a blog post popped up. My new health care advocate friend Michelle wrote a blog about what fucked up shit people say to schizophrenics and one of the comments hit me.

http://www.schizophrenic.nyc/dumb-fcking-sht-people-said-btw-im-schizophrenic/

And truth be told it is pretty much with many health issues. The diabetes community feels it when they eat. The RA peeps feel it when they can not move and people judge them for not moving enough. The mental illness gets wacked left and right with it for so many reasons. The HIV community lives with it and the struggle is hard. When will it end? When will people stop being judged for what others can not see or understand?

Which brings me to HealthEVoices17 and why this conference is vital to me opposed to all the others I attend. Why I care so deeply for this one. The theme of the conference was “Together we Thrive”, so true. See it did not matter to anyone at that conference if they had RA, IBD, MS, cancer, HIV, bipolar or anything in the middle. There was no judgment at all. No one carried that if you could not make it to drinks or open mic night, it did not matter if you needed a nap or more time in the relaxation room. All we cared about was that everyone was “healthy”. The concern was about self-care for the other, not selfishness. We get each other, we get the looks of mental pain, the unseen aches, the wobble or the staring off. We get the angst that others do not and want to make a difference in each other's life. We get what it is like to live with our conditions no judgment and we are still friends.

Things I am pretty proud of in the SDBC world

Together we thrive is really meaningful to me. No I do not have diabetes/RA/IMB/HIV but maybe if I share a blog post written by one of my HealthEVoices17 friends on SDBC someone there may connect with them. That is thriving!!! I could not do it without my friends living with that condition. You get what I am saying?? We need to stick together, we need to stop just sharing our story to our select community and branch it out. HealthEvoices connects us in a way we would never have a chance to. I wore many hats during HealthEVoices sometimes it was in the Wisdo video booth collecting stories which were so amazing that I was lucky enough to really listen to so may of my friend's lives. Or maybe I was connecting with someone with cancer who needed to feel they are not alone. There was the time I sat with the MS community learning about new drugs that are hopeful to me. But what still brings me to tears was after dinner one night we were in the bar area talking. A Janssen rep was hanging with us. Someone was telling a very intense story it wasn't pretty or happy but it was real or raw. Her hand was on his arm and she was hearing every word he said. Her eyes locked and he told his story. I know of no other conference where the rep will do that and do it with kindness. What a way to thrive!