Cancer Couch at Pluta

Patients at Pluta Have a Guardian Angel

Cancer Couch at Pluta

It’s very expensive to have cancer. There are scans, monthly labs, Doctor appointments, drugs to fight the cancer and more drugs to help with side effects. It can be very overwhelming and if you’re like most people, it can be financially devastating.

There are some organizations, such as The Pink Fund, that are available to early stage breast cancer patients that offer financial help with non-medical related bills (rent, utilities, etc.). There are very few organizations that offer immediate financial help to Metastatic Breast Cancer patients.

This is often a big problem to women that need child care in order to go to appointments or having to choose between groceries, rent or chemo. I mean, seriously, the basic living necessities will always win, am I right?

Enter Rebecca Timlin-Scalera, founder of The Cancer Couch. In addition to raising money for the treatment of Metastatic Breast Cancer, Rebecca has begun establishing “Angel Funds” in the communities of some of the women that have been fierce advocates and educators of Metastatic Breast Cancer and who have also supported The Cancer Couch Foundation.

A portion of the funds raised from fundraising events in their respective communities will go to the local Metastatic fund.

The local fund is administered by the honoree’s local Cancer Center or Hospital. Metastatic men and women can inquire about receiving immediate help to cover rent, groceries, a utility bill, child care or transportation to a doctor appointment. The money does not need to be paid back. Everyone needs help from time to time. It’s OK to ask for help and with this fund now Metastatic Breast Cancer patients can get financial assistance.

I am very proud and humbled to announce that there is now The Susan Rahn Fund for Metastatic Breast Cancer Patients at The Pluta Cancer Center in Rochester, NY.

On October 28th, Rebecca and I met with Jamie Bishop, Executive Director and Judy Zeeman-Golden, Oncology Social Worker of The Pluta Cancer Center. Pluta, is where I receive my monthly treatment. Rebecca presented Jamie and Judy with a check for $2,000 to establish the this new fund.

Every fundraising event that is held in Rochester for The Cancer Couch Foundation, 10% will go directly into the Susan Rahn Fund at Pluta. Additionally, donations may be made directly to that fund via The Cancer Couch website using this link. Just scroll down until you see my name and picture and click the donation button.

The Susan Rahn Fund

As the holiday season approaches, I ask that you consider making a donation to this fund (if you live in the Rochester or surrounding area), or any of the funds listed on The Cancer Couch site, so that those seeking treatment for Metastatic Breast Cancer can have one less thing to worry. What better way to give thanks for your good health and spread some holiday cheer in the process?

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On the Road Again

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Today I’m making my favorite trip again. *eyeroll*  I’m headed down to Sloan-Kettering for another fast and dirty trip for a PET/CT.

The last time I updated regarding my health, I was going to see a GI Oncologist at Sloan on September 28th to see if she could unravel the mystery that is me. I had only planned on being there over night so I booked the train for Tuesday, September 27th and invited my Mom to come along! In past 3 yrs she had never come with me to NYC so I thought this would be a good time for some girl time. Oh, life….it has such a way of throwing irony at you at the worst times.

Our trip to Manhattan was pretty typical. We were delayed. I can’t even get mad any more but I do get a chuckle when I hear the people around me freaking out about it. We ended up being about 3 hrs late getting in and we were pretty tired so, my grand plans of doing some sightseeing were squashed.

The day of my appointment with the GI Doc, we got there early – 9am. I always get to appointments early in the hopes that I can get in early. Nope. We waited almost 2 hrs before I was called back. It was another 90 minutes before I actually saw my Doc. I saw her nurse who took my vitals and I saw her Assistant who did a very intense intake. Then I waited some more. I was getting nervous because we had a train to catch at 3:40pm.

At almost 1pm, Dr. Ludwig walked in. I loved her almost immediately. She listened. She heard me. She validated me. She promised me she would get to the bottom of what was going on. And then she freaked me out with what she said next: “You need to change your plans because you’re not leaving today. I need to get you into imaging right away. Sit tight I’m going to make some calls right now and get some scans scheduled.”  *Gulp*

Then things seemed to go pretty fast. I had to make 2 calls immediately – one to the hotel and the other to Amtrak. Then a nurse came out – “Dr. Ludwig wants you to do a Colonoscopy and Endoscopy on Friday the 30th” Yeah, no. I had to give a speech at Adam’s school that day. I would have to come back. So, we scheduled that for the following Monday, October 3rd. (Sheesh!)

At 2pm I finally had my appointment time for an abdominal x-ray and a Lumbar/Thoracic Spine MRI. Two different locations. 5pm and 7pm. We could finally leave, go get lunch and relax before we had to go back out make our way to my appointments.

The Imaging office for the MRI was at an affiliate location connected with Sloan and in a very upscale part of Manhattan. While I was filling out the paperwork. My Mom started poking my arm and whispered loudly – “LOOK!”  I looked up and standing at the counter checking in was – and I’m not even kidding – Martha (freaking) Stewart. In all the times I have been to NYC this was the first time I had ever seen a celebrity let alone sat within 2 feet of one. My Mom was literally seconds away from talking to her when someone came out and whisked her away for her x-ray. And just like that she was gone.

While I was waiting for the MRI, I received a call from Dr. Ludwig’s office. The abdominal x-ray I had an hour earlier was OK and I was officially scheduled for the Colonoscopy/Endoscopy for the following Monday. (Joy!)

To make a long story….well, it’s too late to make it short so I’ll just jump to the why I’m going to Sloan today. So, the MRI was negative for any spinal compression or metastasis that would cause my spontaneous GI episodes. The Abdominal x-ray was negative for any obstructions. The Colonoscopy/Endoscopy was OK. The biopsies that were done – there were 4, including a gastric polyp, were negative. She also tested me for C.Diff, H.Pylori, and Colitis. It was noted that my stomach is very inflamed and angry. All of this is GREAT NEWS. The best news. One tiny little problem….I’m still losing weight, I’m still not able to eat all the time, I’m still battling nausea and I’m having GI issues and I just don’t feel good.

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There was a question as to when I would have my next set of scans. Stick to the 3 month plan or wait until February which would be 6 months. I was almost inclined to wait, however when Dr Modi, my Oncologist at Sloan heard that I’m not better and I’m down another 6lbs her office called me and said she wanted me to have the PET now.

I usually have the results the same day – one of the awesome things I love about Sloan – but my scan is late (3:45pm) and it’s a Friday so I’m not anticipating hearing anything until Monday.

*Fingers Crossed* Hoping to keep my ‘unremarkable’ PET scan streak going a little bit longer.

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Adam Rallies The Troops – Brain Freeze for Research!

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This post is going to be entirely about me raving about my son, Adam. So, don’t say I didn’t warn you!

At the end of his Junior year last year, Adam was elected President of the National Honor Society at his High School – Bishop Kearney. It’s a big deal just being part of the NHS but to be President, there comes a lot of responsibility and obligations. Part of that being coming up with fundraiser ideas throughout the year that the NHS can do for the community.

Over the summer Adam came to me and asked me my thoughts for October. Typically, the school likes to do something to recognize Breast Cancer Awareness Month and he is acutely in tune with my aversion to ‘pink’ and the useless ‘awareness’ campaigns that happen during October.

I immediately thought of my friend and fellow advocate, Rebecca Timlin-Scalera, founder of The Cancer Couch Foundation. I told Adam about a fantastic fundraiser that she held at her son’s school that was very successful – The Scoops Ice Cream Eating Contest. This would be the perfect event for a Middle/Jr/Sr High School. What kid doesn’t want to eat as much ice cream as possible in 5 minutes?? The idea is simple, kids form teams of 4. Each team needs to raise at LEAST $100. They can raise more but they must raise $100 to be in the contest. They have 27 days for their team to raise as much money as they can. On the day of the Scoops Challenge, teams will go against each each other until they reach the final 2. The final 2 will have one last challenge and then one Grand Prize Winner will be named. There is no selling of a product, catalogs to have people to look through. Just asking family, friends and anyone else to sponsor their team.The best part about this, aside from the ice cream, is that all the money raised would be going to The Cancer Couch Foundation which exclusively funds Metastatic Breast Cancer Research. Win – Win!

Adam got to work! He contacted Rebecca to get all the details and he then met with his adviser, Mrs. Sikora and his Principal, Mr. Simoni and eventually the Parent’s Association. Their response was unanimous – Absolutely, Yes. Adam began planning and the event began to take shape. Everyone was on board!

At the end of September, the fundraiser was announced at the kick off of Homecoming Pep Rally. I was invited to speak to the student body, tell them my story and how they would be playing a big roll in not just helping me but the 155,000 people like me living with terminal breast cancer by raising money for the Breast Cancer that kills. I explained to the kids that all that ‘pink stuff’ that they see in the stores doesn’t always mean that the money they spend will go to research or to even help anyone at all. I also had the kids actively involved in my explanation of the fact that One in Eight women will get diagnosed with Breast Cancer in their lifetime. Each student was handed a Popsicle stick as they walked into the assembly. Some of the sticks had a blue dot and some had a blue and an orange dot and the rest didn’t have any color at all. I asked those students with the both colors on their sticks to stand. Those students standing represented the “One” in One in Eight. Those students according to the statistic would be diagnosed with Breast Cancer at some point. Then I asked those students standing that just had a blue dot to continue standing and the rest to sit. Those that remained standing represented the 30% of Early Stage Breast Cancer patients that eventually become Metastatic and are now terminal.

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Adam planned, organized and worked with the other NHS students all month to make the fundraiser successful. There ended up being about 12 teams!

This past Friday the 28th was the BIG day!! 25 gallons of Ice Cream were just waiting to be eaten and Rebecca Timlin-Scalera even flew in to host the event!

 

I even did a short Facebook Live video as the event was beginning…….

 

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Even the teachers got into the challenge!

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The Bishop Kearney Drum Line

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Focused on not getting Brain Freeze!

The Drum Line was the absolute best! It may not look like much with the buckets but they really were good – they kept the energy and excitement level high!

Prizes were given out for the most scoops eaten (collectively speaking) and there was a tie between 2 teams – 46 scoops of Ice Cream eaten!!  And there was a prize for the most money raised!

I’m proud to say that the students raised $2,000 for Metastatic Breast Cancer Research and they aren’t done yet – with the ice cream they have left over they are going to sell ice cream sundaes at lunch and put THAT money into the pot for a bigger donation…AND Rebecca talked Mr. Simoni into letting the students have a Blue and Orange dress down day – a Cancer Couch Dress Down Day!  So, there’s THAT money as well.

I’m so proud of Adam for taking this on and doing all the work himself on top of a full load of classes and having a part time job after school. I’m also so grateful to Bishop Kearney for rallying around Adam and me and allowing Adam to do this fundraiser that benefits Metastatic Breast Cancer.

I truly hope Mr.Simoni, Mr. Miller, Mrs. Sikora and the administration know just how much it means to me – to Adam.

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Advocacy Stampedes in D.C.

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Melissa McAllister, Me & Melanie Childres representing The Underbelly

As a metastatic breast cancer patient and advocate, I try to use my voice in many ways to bring awareness to the fact that metastatic disease is woefully underfunded. I’ve been lucky in that I’ve been able to travel to be with friends and other fierce advocates because, let’s face it, there is power in numbers.

Last year, I traveled to Washington, DC to participate in the 1st Annual Die-In at the United States Capitol with Metup.org. The event was held on October 13th, Metastatic Breast Cancer Awareness Day. It was a symbolic visual event where advocates and metastatic breast cancer patients gathered on the lawn, lay on the ground and ‘died’ just as 113 women die every day of this disease. The Die-In was a bold vision that came from the brilliant mind of Beth Caldwell during a Metastatic Convention in Philadelphia in 2015 in which I was in attendance. You can read about that here.

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This year the event was joined by other significant partners such as:  METAvivor.org, CancerlandLandtv and Refinery29 and was renamed #StageIVStampede. We found out just days before that Oscar winning actress Mira Sorvino would also be attending and supporting her longtime friend, Champagne Joy. The significance of this is unprecedented as no other celebrity or voice of such magnitude has ever lent their voice to the Metastatic Community. The typical voice of a public figure with regard to Breast Cancer is the standard “pink” rhetoric of ‘stay positive and you can beat it’. That was not the message Mira had for lawmakers or the media.  And OMG – we met her and she is AH-mazing!

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Melissa McAllister, Champagne Joy, Susan Rahn, Mira Sorvino & Melanie Childres #Stage4Stampede, Washington D.C 

I attended the event representing The Underbelly.org, the online magazine dedicated to changing the breast cancer narrative I’ve talked about in previous posts, along with my co-editors and magazine founders, Melissa McAllister and Melanie Childres.

The day began at 8:15am. Everyone gathered at the Washington Monument to organize, and then began a peaceful organized march with signs in hand to the west lawn of the Capitol building. During the march I took pictures of those walking, hugged friends we came upon and even did a live feed via Facebook from The Underbelly page! Halfway to the Capitol we were met by a reporter for Refinery29 who asked to speak with us about why we were marching and why the was significant to me, a Metastatic Patient.

Once at the Capital we organized, heard speeches by MET UP co-founder, Beth Caldwell and then we laid down on the grass as a bell tolled 113 times representing the 113 women that die every day. As it was the previous year, it was emotional.

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Melanie Childres, Melissa McAllister & Susan Rahn – Dying for a Cure – Photo By Kipp Burgoyne.

After the last bell rang, as people began getting up, people embraced and the love and the promise of hope filled the air.

Many went on to hear speakers like METAvivor President, Beth Fairchild, METAvivor Co-Founder CJ Corneliussen-James, and Patricia Steeg from National Cancer Institute in the Cannon Building before breaking off into groups to meet with lawmakers. Their purpose was to inform them of the importance of allocating more funds to metastatic research and sharing personal stories is key in being successful.

Any lawmaker would be hard-pressed not to be emotionally moved after hearing personal stories from these Stage 4 advocates as to why research is important to them.

It was a good day seeing old friends and meeting new ones. It’s always a treat to meet in real life, people you interact with online on a daily basis and give them that long, overdue hug.

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We kept our Underbelly readers updated throughout the day with live Facebook updates from various parts of D.C. while we literally logged over 9 miles of walking. I’m willing to bet we helped Starbucks stock just a tiny bit that afternoon.

We ended the day taking pictures of the sun setting over the Capitol, the Washington Monument and the Smithsonian before taking the train back to our car.

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I’m already looking forward to next year’s event but truth be told, I’m secretly hoping it won’t be necessary because our lawmakers heard us on October 13th.

The Underbelly Team

The Underbelly – Changing Breast Cancer Narratives

In my last blog post, I left a link at the bottom of the page to a project that I’m involved in with two of my closest friends – Melissa McAllister and Melanie Childers. (I hope that you clicked thru and took a look!)

The Underbelly was an idea conceived by Melissa and Melanie after many conversations about all the harsh realities that come with having a diagnosis of Breast Cancer and the aftermath of it all. Everyone hears of the “happy celebrations” and “bell ringing” after treatment ends but no one ever talks about what REALLY happens. The issues that can arises after surgeries, the depression, the feelings of isolation, how your body changes with treatments, PTSD and the list goes on. Men and women need to talk about these things and many feel they don’t have an outlet for these conversations or a safe place to go to read about others with similar experiences.

The flip side is what those dealing with Metastatic Breast Cancer live with. The shock of getting a terminal diagnosis, having to be in treatment for the rest of our lives, having to process grief sometimes on a daily basis when another friend dies, the anxiety that comes with every blood test, scan and test.

Factor into all of that there is a discord between those that are diagnosed with Early Stage Breast Cancer and those living with Metastatic Breast Cancer, the three of us wanted to create a community all of it’s own where it would be inclusive of ALL of those that have ever had a diagnosis of Breast Cancer – past or present. The Underbelly would be a place where we could share real, raw stories that were not ‘sugar coated’ or covered in ‘pink platitudes’. And not just our stories – we invite and encourage others to contribute their stories and experiences.

And that’s just what we did.

In August, The Underbelly had a soft launch of it’s website and Facebook page. We were extremely pleased with it’s success and the embrace we received from the Breast Cancer community.

We have now expanded our mission and we have some pretty lofty, although very attainable goals, for The Underbelly. However, to make it all happen we have started a Crowdfunder and have set a goal of $20,000.

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The magazine is not supported by way of subscription fees, which means we get to deliver amazing content to our community for FREE. The costs of running the site are around $2000. That includes hosting, a code monkey on the backend, equipment, and storage.

We’d like to pay back our initial investors (Melanie’s awesome folks) at $2000.

Most importantly, we need YOUR help to fulfill our commitment to providing a source of financial assistance in and for the breast cancer community. Cancer really sucks your wallet dry. Giving women & Men who’ve been diagnosed with breast cancer an opportunity to tell their stories and make a little cash on the side is incredibly helpful, so your support will directly help contributing writers get PAID. Three articles/writers a week @$50 per article for 9 months is $5400.

We also intend to grow and expand our reach and voice in the community, including podcasting and video. For that, we need funds to invest in joining with other projects, traveling to conferences and events, advertising, and sponsoring causes that positively impact the community.  We estimate $5000.

To continue growing and supporting ourselves, we will also be launching a store to generate income and distribute super cool swag, such as bracelets, t-shirts, mugs, posters and other awesome items. $2000 will go toward launching the shop.

Additionally, a percentage of proceeds from certain merchandise sold through our store and this crowdfunder will go to nonprofit organizations who either fund metastatic breast cancer research or directly assist patients in need. 10% of the bracelets will go to the non-profits we’re supporting, around $2000.

And of course, if fully funded, the administrative fees for running the funder itself come to around $1600.

As of last night we reached 16% of our goal!!  Not bad for launching just one week ago today, but we are still a long way off.

We have some pretty nice “perks” that can be chosen when making a donation. There are 6 different Mala Bracelets that represent the 6 Non-Profits that we support and each were designed in their respective colors by our own talented Melissa McAllister. 10% of each bracelet goes back to that NPO.

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Your contribution may support a writer directly, or get your ad in front of our email list, or a full sponsorship of the site for a week, two weeks, or a whole month!

If you can’t give to our campaign, that’s OK!  I still love you an awful lot.

It would be SUPER awesome if you’d share our campaign on your social media platforms or even this blog post and encourage your friends to help us out. You never know who might be looking for something just like The Underbelly, or who might want to share their story!

Also – and this is a pretty big deal, at least I think so. TODAY – well tonight at 7pm EST. I am going to do a Facebook LIVE on The Underbelly Facebook page and broadcast to whoever may be out there to talk about why The Underbelly is important to me and perhaps if some of you pop on and don’t leave me hanging you can even ask me some questions. I’m kind of nervous about doing this but Melissa and Melanie have already done it and today is my turn and I can’t let the team down!!  So, set an alarm – mark your calendar – SOMETHING!!!  Please SHOW UP!!

The Underbelly – Changing Breast Cancer Narratives

Optimistic about finishing dessert

Reflections & The Future

It’s the last week of September and there is no denying that Summer is definitely over. I’ve been in a deep denial over it. Deep. I could ignore it with the temps still tickling the 80’s but that’s changing now and it’s getting serious with helping Adam get college applications and necessary paperwork in before the end of October.

There were no big vacations this summer. Instead, Adam and I went on a few college visits that included a trip to NYC  where we killed two birds with one stone with an appointment at Sloan Kettering for me and a tour of NYU for him. The other college visits included University of Buffalo and University of Rochester, although since we live in Rochester I don’t know if you can technically consider it a ‘visit’.

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University of Rochester

The high-light of the summer was absolutely our trip to NYC. We packed a lot in those 2 days. I even managed to squeeze in something from my bucket list: Serendipity 3!  If you don’t know, Serendipity is this tiny, eclectic restaurant that is most noted for their desserts, specifically the Frozen Hot Chocolate. Reservations usually need to be made weeks in advance BUT if you are willing and able you can take a chance at walking in and waiting for a table. Adam and I went by what Google said were their slow vs. busy times of day and decided to just go and see what would happen. It was 4:30pm so a little bit of a wait wouldn’t be THAT tragic. At 6:20pm we FINALLY got a table! Our waiter told us that the table we were seated at happened to be Marilyn Monroe’s favorite table. Sure – I bet he says that to everyone he serves! We intentionally didn’t get stuffed on dinner so we could enjoy a decadent desert. Let me warn you now – they do not skimp on the dessert portions – AT ALL. The ice cream creations are served on top of a separate plate because they are literally overflowing and spilling everywhere. Let’s just say that experience didn’t do me any favors. I was absolutely miserable the rest of the night but it was totally worth it.

The next day we toured NYU. Wow. I absolutely understand why Adam wants to go to school here. Besides the obvious – being in Manhattan – the ‘campus’ includes buildings all around Washington Square Park. It’s a very different college experience but one that also affords so many more opportunities to do and see things not accessible or available anywhere else.

I’ve tried to pin Adam down on where his heart is with regard to his first choice. He won’t give me a straight answer. I guess we will just have to wait and see when the acceptance letters come and he has to make a decision.

I’m hoping that he and I can still squeeze in one last trip before he goes off to ‘wherever he’s going off to’ after graduation. A lot depends on how far away he’s going to be. If we don’t, he does have a class trip to Italy in April so that will just have to do!

This week I’m headed back to Sloan to meet with a GI Doc to see if we can start to figure out what is causing my ongoing weight loss and nausea. I’ve stopped one of my Cancer meds – Ibrance. I’ve weaned myself off the Gabapentin I was taking for pain and most recently I cut my dose of Topimax (anti-seizure med for migraines) in half. I’m basically down Faslodex for the Cancer and the bare minimum for everything else. The next person who tries to tell me this is a ‘med issue’ is going to get a black eye because so far – I still feel pretty gross and the weight is still coming off. At my Dr appointment on Thursday I was down another 6lbs.

And finally – stay tuned for October. I’ll be headed back to DC to join my fellow advocates on October 13th – Metastatic Breast Cancer Awareness Day to March and participate in the 2nd Annual Die-In for Metastatic Research. I promise you, this year will be epic. I’ll have more information soon but we hope to be able to stream live!!

I invite you to check out a new endeavor I’m part of that I’m wildly proud of:

Before You Post That Meme….

​We’ve barely had time to dip our collective toe into September and the just like the Christmas decorations we see way ahead of schedule, it seems the Pink ooze that is October has already begun.

To be perfectly honest, I feel like asking for my high blood pressure meds back (that I finally got off of) until November arrives.

Breast cancer is the ONLY disease that is sexualized and trivialize. It’s the ONLY illness that is treated like a sorority, where you’re literally welcomed in by others. Do men go around wearing a jock on the outside of their clothes in the name of ‘awareness’ for testicular cancer? Do they wear a strap on to to bring awareness to the CAUSE of penile cancer? Nope…because it’s ridiculous. 

So, why sexualize cancer of the breast? What’s the point of a cryptic Facebook post, really? How is a selfie going to help anyone in actual need? What is going without a bra truly going to do for anyone? And who is going to know you’re doing it unless you either go topless or wear a thin white t-shirt to show your bare breasts – which again is only sexualizing a deadly disease….a disease that kills 113 women in the U.S. every day. A disease that I will die from because we still don’t have a cure for.

Some of these ‘fun and games’ in the name of awareness even hijack the one and only day dedicated to the Breast Cancer that kills – Metastatic Breast Cancer Awareness Day  (October 13th). You’d think that out of 31 days MBC would get more than one day of recognition. After all 40,450 Men and Women will die in 2016 because of Metastatic Breast Cancer. Don’t they deserve more than one day?

I’ve been accused of being angry and insensitive because isn’t any awareness good for the cause? I make no apologies for my strong opinions about my emphatic objections to the way Breast Cancer has been reduced to a cute, sexy marketing campaign and not the serious and potentially deadly disease that kills so many YOUNG women as well as men every day/every year. 

If raising awareness is important to you personally, it would seem to me that actually doing something that would have a direct impact on folks with Breast Cancer or helping to educate those that could benefit from it would be the better option than just choosing to do something that you could do any other day of the week.

The day I stop being angry and pissed off about how the public views and treats Breast Cancer will be the day the landscape changes or more realistically, the day I die from MetastaticBreast Cancer.