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.

“You don’t get IT”, but it’s not your fault!

Th following is a guest blog post from an amazing friend.

I am one of the many faces of Metastatic Breast Cancer

In a culture focused on survivorship, those with metastatic breast cancer who will be in treatment for the rest of their lives can feel isolated and misunderstood

Let me educate you on what this means:

• Metastatic breast cancer, stage 4 breast cancer, is a stage of breast cancer where the disease has spread to distant sites beyond the axillary lymph nodes.

  • Liver, Bones, Lung, Brain

• Between 20 and 30 percent of women with early stage breast cancer go on to develop metastatic disease. While treatable, metastatic breast cancer (MBC) cannot be cured. The five-year survival rate for stage 4 breast cancer is 22 percent; median survival is three years. Annually, the disease takes 40,000 lives…I’ll let that sink in for a minute..tick tick tick. 

• We will endure CT Scans every 3 months for the rest of our lives

• Every 3 months, we have anxiety and anxiety that you can’t imagine

  • The results – we hold our breath and pray that cancer is at bay, not growing, not showing up in other areas

• We will have some sort of therapy for the rest of our lives. 

  • Infusions every 3 weeks

  • Extra drugs to combat hormones

  • Most of us will endure Chemotherapy again, which means here we go again with:

• Nausea

• Gaining weight

• Losing weight

• Countless needed pokes at our portal

• Mouth Sores

• Rashes

• Diarrhea

• Loss of hair, including eyelashes and eyebrows 

• Mood Swings – that we can’t apologize enough for

Think of it this way, we mentally live in a square with different levels of stairs.

We all come in on the first floor – this is where they give you the news of your port, how much chemo you will have and for how long. You may get a brief out lookout of your future treatment plans.
Then we must get the port put in. Read about how goes…it might scare you, I know I was 

2nd Floor leads to your first chemotherapy where we will be spending the next 3 to 6 months juggling doctors vs Chemo infusions every week for hours, sometimes 7 to 8 hours a day with our shortestest day 4 hours.

3rd Floor leads us to maintenance which may mean infusions every 3 weeks, extra drugs like Letrozole which have side effects of: think about that one for a minute…tick tick tick

Some people I have talked to have had to stop this drug and try another one.

  hot flashes, 

 hair loss, 

 joint/bon/muscle pains 

 tiredness – LOL that stays with you for a while

 unusual night swats – invest in a couple of extra sheets

 nausea, 

 diarrhea, 

 dizziness, 

 trouble sleeping, 

 drowsiness, 

 weight gain, - I say HA bring in on, 2oz at a time would be good 

 weakness

 flushing (warmth, redness, or tingly feeling), 

 headache, 

 constipation, 

 numbness/tingling/weakness/stiffness in your hand or fingers, or 

 pain in your hand that spreads to your arm, NEVER be CURED writs, forearm, or shoulder

4th Floor the floor we hope to never reach.   4th floor may mean surgery, radical drugs or the worst hospice-another friend is gone.

However, we can bounce to floor to floor at any time.  So, we may sit on 1 or 2 for years hopefully we can get a reprieve. 

We know that we will fight to keep the cancer at bay, if that’s what the cancer wants to do. 

• Thinking of the future can scare the hell out of us – I hope I live to see my grandchildren
  can you imagine that thought running through your mind every time you see your grown children?

• Angry, Stress, Outraged, Depressed, Scared are many of the feelings that we have

  • 5% this is where we could be at any time 

  • 95% of the time we are positive and as a matter of fact – can’t change what I have

How can you help? Please reread what you are sending us! We know that you are saying things with the BEST intentions. 

Things I’ve heard: 

• Your just not being positive – read above

• Your giving up – really you can say that to me? 

• I’m Sorry – for what you didn’t do this? I heard a good response for this “Don’t be sorry, donate” 

• When I look at my life, its not so bad compared to yours – sorry but WTF 

• My favorite – What can I do for you? I don’t know, just do whatever you feel is good to do

  • I’ll never say no to a home cooked meal 

• Not that I hear this per say, but I see it your eyes when you give me the pity look. I’m just out doing my thing shopping and have a great time and your look is just a reminder to me of what I have. 

When we post how we are feeling, it’s just that! We love your best intentions to respond. But the best response could be, hang in there, you’re doing great, I’m proud of far you have come, when’s a good time for a visit, let me help you with etc. Say things like this let’s us know that YOU GET IT. 

I know that you will not truly understand what we go through because, you can’t unless you’re in the same boat (I would never want that). 

To tidy this up, we love you and we so appreciate all the support you give to us.  We just want you to have a better picture of what our life is like. Plus we are trying to educate the public! 

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 

Mesothelioma & Breast Cancer

This article was written by a friend, hope it sheds some light on a very real issue.

Is there a link between breast cancer and mesothelioma? One is a common cancer in women, and the other is rare and caused by asbestos exposure, usually in men. Researchers are finding similarities between the two, and further studies are underway.  The connection between asbestos and mesothelioma is already clear, but scientists say asbestos might contribute to cancer of the breast, digestive system, reproductive, and lymph systems.

What is mesothelioma?

Mesothelioma is an incurable cancer that starts in the mesothelium, the tissue that covers internal organs. There are four kinds of mesothelioma: 

• pleural which affects the lining of the lungs

• peritoneal which affects the lining of the abdomen

• pericardial which affects the heart 

• testicular

Pleural mesothelioma, the most common form, causes breathing problems, chest pain, coughing, and unexplained weight loss. Symptoms may take from 20 to 50 years to develop, and the risk after exposure never goes away. 

How is breast cancer linked to mesothelioma?

Studies done on breast cancer and asbestos have been inconclusive, but a few suggest a link. In one United Kingdom study, women who lived near an asbestos manufacturing plant had a slightly higher chance of getting breast cancer.  Other research in Great Britain also found that women who had asbestos fibers in their lungs from past exposure were more likely to develop breast cancer. In 2009, however, an Australian study looked at over 3,000 women who lived in a town that had an asbestos plant until 1966. Compared to the general population, the women were more likely to get ovarian or cervical cancer, but their rate of breast cancer didn't go up.

Researches know asbestos enters the lungs when people inhale the fibers, but they don’t know if the fibers can spread to the chest cavity and breast through the lymphatic system. They are also uncertain if shards of asbestos can travel to the wall of the chest through the pleural tissue or lungs and cause cancer. 

What do researchers know about mesothelioma and breast cancer?

One factor that makes mesothelioma hard to diagnose is its similarity to other kinds of cancer. Although rare, at least one case of metastatic mesothelioma was mistaken for breast cancer. Symptoms of breast cancer may result from cancer in the mesothelium. Because markers, structure, and cell growth can be similar in both diseases, the origin of the cancer can be hard to establish.

Although rare, there have been incidents where high-energy radiation used to shrink tumors in breast tissue led to mesothelioma. Radiation used to treat breast cancer passes through the skin and pleural cavity, and it can occasionally cause changes that lead to cancer. 

Researchers who discovered that mesothelioma could be mistaken for breast cancer wondered if breast cancer treatment would also help mesothelioma. Treatment with a drug called aromasin reduces estrogen and slows the growth of tumors in breast cancer. When given to mice with mesothelioma, it slowed the spread of cancer cells and reduced the size of tumors. This could be because cells in the two diseases are similar. 

Pliny the Elder wrote about the dangers of asbestos in ancient Rome, but the toxin's link to mesothelioma was unknown until the 20th century. Although the government has taken steps to limit the use of asbestos since the 1970s, the Trump administration is trying to ease those restrictions. Americans need to stand up for environmental safety and medical research if diseases like breast cancer and mesothelioma are to be eliminated.

Numb

This is a guest post from a dear friend that wants to remain anonymously. The words are her’s and they are powerful. The images are to show you the difference in many

I envy other women’s nipples. I don’t want to be the weirdo who stares in a yoga class, who vaguely remembers what it was like to feel self-conscious about my own hard nipples at the end of a sweat session. Such a simple thing, those two sensitive nubs. 

One of the things well-meaning people like to say when a friend is going through breast cancer is, “At least you get a free boob job!” It’s something I heard more than once. But rarely are the final products larger, fuller, or prettier than the breasts they’re replacing. A mastectomy is not a boob job. It is an amputation, a cleaving off of one’s cleavage, a removal -- one hopes -- of disease.

It is a strange thing to shy away from taking my shirt off in front of my husband when the lights are on. I’ve turned my back while undressing since just three years into our marriage. I wasn’t always so modest. My twenty-five-year-old self in her low-cut shirts and dancing on tabletops could attest to that. Despite reconstruction and expensive tattoos that look like real-deal nipples, I am self-conscious about the purplish-blue scars that run across the lumps where my breasts used to be. Despite my husband’s proclamations that he doesn’t care what they look like, I do. I am envious of women who seem to embrace their scars so readily, especially on social media. Am I the only one who loves the story these scars tell, but still has a hard time looking at them?

But the toughest thing about my post-mastectomy “breasts” is that they have no sensation. According to this article, I am not alone, though doctors mostly don’t mention it at the outset. Perhaps they think: Be rid of the cancer, and all will be well. 

Sometimes I can almost sense the sudden contraction I used to feel when I walked into a cold room, like my brain still sends signals to flesh that is no longer there. When my second baby was born, I would “feel” the internal pull and tingling that used to precede my milk letting down when nursing my firstborn. But on the outside, my skin is mostly numb. Nerves were cut during surgery, and the sharp zings I once felt tearing across my chest, signs that my nerves were regenerating, stopped years ago. 

Seven years later and I still miss my nipples. I miss those nerves-regenerating zings, even. I hadn’t realized how much I’d relied on my breasts, sexually, until they were no longer participants in bringing me pleasure. These new ones are all form, but no function, like Barbie boobs (but less symmetrical). And so I will occasionally be the weirdo staring at other women’s chests after yoga.

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.

Spouses and Cancer

A friend asked me what I wanted my husband to know about my breast cancer. I literally can not stop thinking about it. I even posted the question on Facebook. There are so many things I want TFO to know about this stupid dumb breast cancer that I since she asked me over 5 hours ago  I am still thinking about it I clearly need to write it out. While I do not regret anything he did there are many things I would want him to know or really understand looking back for sure.

First, know that my husband did the best he possibly could. We had no idea what we were doing then. NONE. He is a fixer, like many husbands and he wanted so badly to fix this when I was diagnosed. He could not figure out how and that was frustrating to him. That is the first thing, I would want him to know he can not fix this, ever. This was not your fault or mine. There is nothing he can do to ever make this right. Nor can he ever really say the right thing. I am not sure if that was harder on me or him. Which ties into the second thing, saying nothing is sometimes the best thing to do. I think we sometimes want to say just about anything but in truth the wrong thing comes out which ends up causing pain to everyone. A simple hug or shoulder to cry on is the best and all we need truthfully. Doing that would have saved many shower sobbing I know because asking me “what is wrong” as I sit with drains or radiation appointments is not really what he meant and not what I wanted to hear. We both know this now. At the time TFO did not know what to say but thought he needed to say something but all I needed was him.

I want TFO to know that even 5 fucking years later this body is not what I envisioned. The scarred, mutilated version I am left with is something that is difficult for me to come to terms with. That while my husband loves me all of me, I am still angry, hurt and sad that what I had is gone and I am so changed. That I can feel the way I did and that I am left with something I had no choice over cancer made me. Yes I have made progress through this but the weight gain and the scars still creep in under the sheets. Add the fear that any moment it could come back and my mind goes very dark. Cancer is a mind fuck no one warns you of yet they leave you to figure it out after. I want TFO to know that part. That I am still processing this whole thing and I need time to build it back together.

My husband should know that these stupid pills I take to “lower my risk” also add to daily joint pain which is also a daily reminder that I even had stupid dumb breast cancer. So while he may forget about I think about it daily with the pain, the scars, the fake boobs- it is all a reminder. I have changed because of this. How could I not? I have changed so much but I am still me. TFO needs to know that breast cancer screws with your hormones so while I may seem out of whack I am! I lost my breast, my ovaries, my uterus, everything. Then I take a fake hormone to block any other hormones trying to get in. It is a major adjustment. And I am tired, so tired.

TFO should know I am sorry. Why sorry you ask? Because there is a layer of guilt. That I did this to our family. That for a year and now for life I put our family through surgeries, radiation, doctor appointments, drains, more surgeries, scans, and fear so much fear. That our boys were robbed of innocence at 12, 10, 6 and 4  years old. It is my fault that on their medical records it will say a history of “cancer”. That for the rest of their life they will live in fear that something will happen to their momma or that they will get sick. I am so sorry. And that is a part of stupid dumb breast cancer my husband should know. One that shatters my heart. 

My husband should also know that because of breast cancer I broke my filter right off. I want people to understand that less than 7% of funding goes to metastatic research or worse 4% goes to pediatric. My eyes were opened because of this diagnosis.  My husband should know that I will bare my scars, not only for myself but so that the next person diagnosed can see that you do heal, the drain holes to close up, that you do get through each step. When others relate to the images or see me they connect and validate my emotions and I heal a little too.  Then we are both not alone. I have been there through it all I refuse to let the next person be in that bathroom crying alone.

TFO should know that while I may not always need him to fix me I do need him to shine my tiara, for life. Even if sometimes it is from a hospital bed. 

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?