“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! 

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.

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.

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?

#whyresearch

Let me start this by stating I am not getting paid for this. I have asked Christopher and Banks to take what they would pay me and donate it to Breast Cancer Research Foundation (BCRF). Why would I do that you ask? Well how the hell could I ever talk about “think before you pink” or “do not buy that pink crap without knowing where it goes” if I took money for writing and promoting a breast cancer campaign?! I could not- I would be a hypocrite.

Breast Cancer Research Foundation and Christopher and Banks, a specialty women’s clothing retailer that’s based in Minnesota and has more than 470 store locations across the country, have partnered up for a breast cancer campaign. During the month of October, 50% of the purchase price  from their Breast Cancer items will be donated to the Breast Cancer Research Foundation. Whoop Whoop!!

I asked Christopher and Banks if there was a personal reason why they are donating 50% of the sales from their breast cancer line to BCRF and they said that they are a woman’s store and want to be active supporters of a disease that affects so many women. I will be honest: That was a better answer than “My aunt had breast cancer,” do you know why? It says that they care even without being directly affected by this stupid dumb disease. Why BCRF? Because RESEARCH! I was in. It’s estimated that 40,450 women and 440 men will die from breast cancer in 2017. We need research dollars to support and help them.

“At BCRF we unite around research, the only way we’ll

achieve a future beyond breast cancer. This lies at the

heart of our Cancer Divides, We Unite storytelling

Campaign.”

Christopher and Banks has been a BCRF partner since 2012 and has raised over $150,000 for breast cancer research. This is money that goes to real research that helps to find a real cure. That is a store I can get behind and go into! And I will be, this Saturday at Great Northern Mall for an event to spread the word. If you have a Christopher and Banks location near you, I suggest popping in during store hours to recognize the strength that women behind breast cancer have, and participate in styling sessions and makeovers. You can also purchase items supporting BCRF online.

In my chat with both organizations, I commented that I was sick of my friends dying they replied, “so are we.” I truly believe they are committed to that. Research is the only way we will stop the deaths. Breast cancer kills more than 40,000 women and men in the U.S. every year. It separates us from our dreams and cuts short the lives we hoped to share with families, friends and loved ones. Christopher and Banks is honored to partner with BCRF to support this mission—and so am I.

“Every hour of research improves outcomes & saves lives. Donate to BCRFcure and we can #BeTheEnd

of breast cancer.”

I know that going into the store Saturday is not going to stop cancer right away, but I also know that supporting amazing organizations that actually care about those dying will. Aren’t you sick of buying something and having no idea where it goes or how it used? Well rest assured: That is not the case here. Since 2008, worldwide breast cancer incidence has increased by more than 20 percent. Mortality has increased by 14 percent. INCREASED! We need to invest in companies that support research dollars and nothing else.

Come hug me on Saturday, buy a super cute top and donate to a freaking awesome organization who has partnered with a fabulous shop! Thanks Christopher and Banks for choosing BCRF. Now time to shine my tiara.

I love PINK

The color you jack asses! Pink is a color that is all nothing more nothing less. It is not meant to cure shit or doing anything more than be a color that you either like or do not. Unfortunately breast cancer took the color and made it into a marketing game, a money making profit off our cancer. Yes, it did do not try to deny it. They took a simple color and made anything from pens to garbage cans to vibrators to KFC buckets. Then they took the pink shit and made it sexy cause breast cancer is so erotic. NOT!!  How does taking your bra off for breast cancer do anything for us who can not even wear one because it is too freaking painful!!!???

You take a month like "Pinktober" and you think great time to educate, tell stories, raise money for research and none of that happens. It is all pink ribbons and happy celebrations and selling a bunch of plastic crap. I know that is all the celebrations are fabulous and should not be ignored and not what I am suggesting. Here is a thought what about those awesome stories of those who were given 2 years to live and are going on 5 or how about the men who get breast cancer or maybe talk to someone who lost their job because of this freaking disease and listen to how they plan to get on their feet again! There is a whole culture that is being ignored just because they do not fit the pretty pink ribbon, I say we untie that and listen to their stories! Wouldn't be amazing if all cancers got together and entwined their stories, how powerful that would be?

I actually believe that we can use the pink ribbon to talk about all this but society has screwed it up so bad that we become too divided. We as a culture only want to see a smiling woman saying "I DID IT" I am cured she elludes while she is dressed in head to toe in my beautiful pink color. While the reality is that is probably has PTSD, scars she cries about, friends she has lost, fears that her cancer will come back (30% change it will FYI) and that she is changed because of cancer. The sexy ads are honestly for me the worse, it makes me so angry that I go crazy. That image puts a nasty pink vomit taste in many people's mouth, a sexy gorgeous women who clearly did not have breast cancer in a super sexy bra saying "do you do a self breast check". Take a minute and understand why that is so offensive. When you make this sexy or trivial in ads and promotions it makes the disease less serious in so many people's eyes therefore people can not heal the right way. We are struggling with the loss of our sexy and media is shoving breast cancer sex down our throats, what the fuck are they thinking?? AND research is not handled right as a result because they can not sell research as "sexy" or pretty pink ribbony crap, you dig?

Breast cancer is never not even for one single moment happy or pretty. It is scary as fuck, it scars you both physically and mentally for life. It takes your body and mutilates it so bad you your self esteem is altered so bad that affects even your desire for sex with the person who has loved and supported you through all this. Breast cancer takes your hormones and rips them out and demolishes you which in turn makes most so depressed they can not see straight. This all happens so fast you can not even put it to words until you are years out and by then your loved ones want you to "move on" yet you are still in doctor appointments, FOR LIFE. Explain how that can be tied in a perfect pink ribbon?

So, while I get that this month is supposed to raise awareness it is simply done wrong there is no denying it. If we could all find ways to get through this month and really open the chapters to NEW discussion what a month it would be. We all know about mammo, self breast checks right? But tell a dude about this maybe he does not know. Tell a story about someone with metastatic cancer and how she or he is LIVING through their DX. Talk about triple neg or inflammatory. Or maybe discuss one one the many points above and how you think we could change or help someone in the middle of this. The point is that the shit we are doing is not working right?! What are we racing for? I am so confused. But that is the next post trust me there is a story there. I am all for the sisterhood  the bonding is what we need to get through this and being proud of yourself. I am not for selling this disease to make a buck and there is a difference and there is harm if you do not watch it. I ask that before you buy anything think about it and maybe find another way to show support and love because most pink crap isn't cure shit right? Not everything goes to real research you have to know what you are buying. Unless it is a pink tiara then please do and send it my way!

Look I just want my freaking color back. I want to wear pink and not have someone say " oh do you support breast cancer?"

"Why Yes I donated two and so much more!"