Advocacy Stampedes in D.C.


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.


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!


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.


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.


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.


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’.


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.


As The Stomach Turns

So, I’ve been dealing with nausea, weight-loss, lack of appetite and change in bowel habits (diarrhea) since maybe March. No one has been able to figure it out. No one wants to take ownership of it. Not my Oncologist and not my GP. We’ve just been monitoring it. 

Nothing stands out in my labs, my Oncologist adjusted the dose of my Ibrance. Palliative Care gave me a stronger anti-nausea medication and now I have Reglan. But nothing changes. 

Except that now I have fun things happening that required me to make an appointment with my OBGYN. I just assumed that all the estrogen suppressing meds have finally taken its toll. Not so much.

When I caught my Dr up on the shit show (pun intended) of the last 6 months she took it all in. She asked me questions. Then she did her exam. Boy I had NOT missed that. Ladies you know what I mean. I was a bit confused when she told me she was going to do an internal exam but why not? Let’s go for the full treatment. When she went to the left side of my abdomen and pressed I let out a sound I didn’t know I could make and I’m quite sure broke windows. My Dr looked at me with a very grim face. She said (and I’m quoting her), “I’m very concerned about you. That area is your colon. Given your medical history you need a complete GI work up as soon as possible. This has gone on far too long”

Well, shit. I’m torn between feeling satisfaction that SOMEONE finally heard me and on the other hand being totally freaked out that there is something really very wrong and has been wrong for a long time.
I’m very anxious to get to Sloan Kettering now. I’m curious to get Dr Modi’s opinion and input on this whole GI thing. I know she can’t do much for me that day but she can order the tests and I can have them done when I get back home. I am hoping that if there is extra blood work she can request that she does so I can get a peek into what may be going on. One thing about Sloan, the labs turn the blood work around with lightning speed. 

Unfortunately, I have been on the Google and I know I shouldn’t have but I need to know as much as I can so there are absolutely no surprises. I’d rather know all the worst case scenarios now and have it be something minor than bank on it being minor and being smacked in the head with something horrible.

The count down starts…..


Viewpoint with Ken Rosato

Just a quick follow up post.
The interview I did with Compassion & Choices New York a few weeks ago, aired last night. I wanted to share it here for those of you that may not regularly visit Facebook or Twitter. 

I’m very pleased with how this turned out. Sometimes after editing, an interview can look very different than how it really happened. Not so this time. There was literally no editing done (that I could see anyway). 

I’m very appreciative of the way Ken Rosato handled the interview and questions. He was every bit the professional you’d expect while also very understanding and compassionate about the subject matter.

Ken, if I’m lucky enough to have you read this: Thank you SO much for giving Medical Aid In Dying a platform on Viewpoint. You’ll never know how much it meant to me.

Our segment is the second one once you click on the link.



The Numbers are Not in My Favor

At my last update there was concern over my rising tumor marker: CA 27.29. I had my labs done on Thursday and the decision was made to schedule a PET/CT for August 2nd. The rising numbers coupled with my continued weight loss (I’m averaging about 10lbs a month) and my over all feeling like crud has my team feeling there is enough concern to warrant the scan. 

I’ve been thinking all morning. I’m working in a visit to Sloan Kettering on August 5th to see my Primary Oncologist while Adam and I tour NYU. I’m going to see if the PET can be done earlier that same morning before my Dr appointment. I haven’t been scanned there in a while and due to the mixed reading I recently had that involved the lymph nodes, I feel it would be best if Sloan could do it. Hopefully, all the stars align and it works out. *fingers crossed*

On a lighter note….I recently returned from a quick advocacy trip to NYC. 

Compassion & Choices asked if I would share my story and why I support Medical Aid In Dying with WABC7’s Ken Rosato for his Weekend Show – Viewpoint. Of course I said yes! It’s important to keep this important topic at the forefront and keep the conversations going. It’s the only way to gain traction and enlighten people about why terminally ill people, like myself, want this legislation. 

The interview took place at the WABC7 studio in Manhattan. The same studio that Kelly Ripa and Rachel Ray call home! In fact, Kelly Ripa was live on the air when we arrived.

Corinne Carey, the Director of the NY Chapter of Compassion & Choices and I sat with Ken Rosato for 10 minutes. Corinne spoke about the facts and statistics of the other states that already have these laws in effect. I shared a shorter version of my story and why I’m in support. I also stressed to Ken that I am in NO way suicidal nor do I WANT to die. I want to live. God, do I want to live. That’s so important for me to have people that don’t know me understand. I so hope I made that clear. I think I did.

The segment, I’ve been told will air on July 27th and again in October. I’ll be sure to post links on my Facebook Blog Page and Twitter.

At least I didn’t look as awful as I felt on the day of the interview. 😉