Solar Powered Florida Adventures

Last week I did something I rarely do but realized I should really do more of – I took a mini vacation. The two days in Albany and the press that followed after took more out of me than I realized. I was exhausted. So, when the opportunity came for me to travel to Florida for a few days I (reluctantly) said yes.

My adventure began with a red-eye flight out of the Niagara Falls airport (yeah, who knew?) via Spirit Airlines to Ft. Lauderdale, FL last Sunday. Apparently, if you pack light enough, something I am NOT known for, you can fly very reasonably on this airline but don’t even THINK of using a legit carry-on bag. Nope. Think small backpack or something half the size of a carry-on suite case and it should also function as your purse ladies or you’ll be paying an extra $50 for luggage. I digress….

I landed in Ft. Lauderdale at 5:30am Monday and it was a glorious 75 degrees!! It already felt like I was going to have a good time. My second wind was waking up and asking about breakfast.

20170206_070402

My early morning breakfast view at The Hilton Doubletree

I should have taken a nap but where was the fun in that? In stead, I decided to take advantage of the glorious weather and get into my (GASP) bathing suit and head straight to the pool for some much-needed Vitamin D. I am extremely deficient after all. It would be very irresponsible of me not to lay out in the sun for a little while, right?? Yes, of course I had sun screen.

After a lovely afternoon of sun and Piña Colada’s, I made plans to see a friend in Key West. The last time I was in Key West was in 2014, which was my first time. It was a difficult trip for me because of all the bone and joint pain. I was also 45 lbs heavier. The heat made moving around that much more painful. I was looking forward to going back not as that person and creating some new memories.

Bright and early on Tuesday, I began the trip to Key West. The drive thru the different Key’s is so nice. About 4 hours later, I rolled into New town Key West and checked into the hotel. I had a bit of time before dinner and meeting up with Monique so that meant I had to check out the pool. It was a bit warmer at 85 degrees but still absolutely lovely. My brain can’t even comprehend leaving anytime soon and returning to cold weather.

img_20170208_201011_229

I met Monique for dinner in Old Town Key West at a lovely restaurant where she works part-time. It’s on the water where the cruise ships dock. There is a large crowd that gather for cocktails at the outside bar to watch the sunset. The food was amazing and the dessert was from heaven. Yes, I could have had the Key Lime Pie but when Caramel Crème Brûlée is on the menu you order the Caramel Crème Brûlée. Always. Thems the rules.

We had a LOT of laughs and a crazy adventure after dinner that involved visiting a local dive bar off the beaten path that, if I had to guess, is probably only known to the locals. Probably for good reason. The rest of the night will, as they say, stay in Key West.

I wrapped up my stay with lunch with Monique at the Blue Macaw for Conch Fritters and then a quick picture of the Southernmost Point. A landmark that I didn’t make it to last time I was in Key West because of the extreme heat.

I also have to add that if ever in the area, at Mile Marker 15, you simply MUST stop in at Baby’s Coffee. They roast their own beans and have the most outstanding blends of coffee. There are also sandwiches and snacks if you’re hungry. If you’re a coffee connoisseur but not going to be in Key West, you can order their coffee online.

20170207_131242

Wednesday night, I very begrudgingly made my way back to the airport to begin my way back to the cold tundra of NY. I was already beginning to become sad knowing that I was leaving the lovely sun and warm weather but Adam and my pup Bella were waiting for me to come home. Oh, they are SO lucky I love them so much.

I barely remember getting back home Thursday morning. It was sometime around 3am. I just know Bella came our of Adam’s room to great me and jumped into my bed with me. When it was time to wake Adam up 4 hours later, this is how I woke up…..

img_20170209_123435_973

This trip taught me something important. If I’m going to keep doing the things that are important to me. If I’m going to keep trying to make a difference in the world, I need to remember to take time for me too. Not just Dr appointments. I need to remember to take breaks and recharge. I can’t run myself down or I won’t be good to anyone.

It was great to get away. I’m so lucky that I was able to. I had a fantastic time and I am absolutely counting the days until I can do it all over again but God help me, coming home to that furry face is the sweetest thing ever.

Words Matter

I had a big week last week. It started in Albany.

Assembly Bill 2383/Senate Bill 3151, the New York Medical Aid in Dying Act, was introduced for the 2017 legislative session on January 20th and on Monday, January 23rd a Press Conference was held at the State Capitol to formally announce it.

I was asked to speak at the Press Conference organized by Compassion & Choices NY.  So, without hesitation, I boarded the train headed to Albany at 5:40am last Monday and thankfully arrived right on time at 9:50am.

We hit the ground running with two meetings with lawmakers & their staff to talk about the legislation and answer any questions they might have. My job in these meetings is to tell my story and why the Aid in Dying Act is important to me. Those that know me, know the two big reasons – I don’t want my Son to remember me when my time comes to transition out of this world and I don’t want to suffocate if the cancer reaches my lungs, starve if the cancer reaches my liver or suffer seizures, hallucinations or not know who my Son is if it reaches my brain. One thing I had with me that I didn’t have with me last May when I was in Albany – a picture of me and Adam. I wanted lawmakers to SEE my son and not just hear his name. They need to connect his face with his name and they did.

13495467_1091688960878117_6801853223939685290_o

The first meetings were scheduled with Senator Bailey and Assemblymember Joseph Morelle. Many times the actual lawmakers cannot attend the meetings but have staff members attend for them and get briefed on what took place and the important parts of the meeting.

I know I make an impression when I can see the tears in the eyes of those we meet with and that’s all I can hope for when I go into these meetings.

At 1pm we gathered in the Senate Chamber for the Press Conference. I was to speak right after Senator Diane Savino and Assemblywoman Amy Paulin. Kind of hard acts to follow but I accepted the challenge. There wasn’t as many people there from the opposition but it felt like there was definitely more representation from the media. I was more nervous this time around than I was last May.

albany-jan-23-susan

Photo: Paul Buckowksi/Albany Times Union 

I was told I did well and my speech was exactly what people need to hear for why this legislation should be an included with end of life options, although I felt myself shaking and stumbling over words that I knew so well and had spoken so many times before. Contrary to the reputation I have of being an outspoken advocate, I don’t like speaking to groups of people. Throw in news cameras, microphones and spotlights and I want to run for the hills!

My day wrapped up with Corinne Carey, Director of Compassion & Choices NY, and I having a follow-up TV interview with Liz Benjamin, host of Capitol Tonight on Time Warner Cable News.

This was what I was MOST nervous about. Last May when I first met Liz and we taped a segment for her show, I was told which camera to look at and how to position my body and which camera NOT to look at. Well, you know how well that works out when you’re told NOT to look at something??? Liz makes it look so effortless while being amazingly professional. Being my own worst critic, I was terrified of making the same mistakes this time around but I think I did a better job. What do you think? You can watch here.

It was a long day but it was a very good day. It begins what I hope to be a successful year of advocating and talking to as many lawmakers as I can about why Aid In Dying is important to me and other terminally ill adults like me. I’m also hoping to change the narrative when it comes to Aid In Dying. I want to remove the word ‘suicide’ from the conversation. I am NOT suicidal. Terminally ill people are NOT suicidal. I want to live, WE want to live. We go through any and all treatments in order to stay alive for as long as possible.

Talking about death is uncomfortable for a lot of people but it’s a conversation that should be had much sooner than later. There is nothing wrong with wanting to have as peaceful transition as possible, if that’s what you want to have. The dying process doesn’t have to be painful. It’s doesn’t have to be filled with suffering if that’s not what the person wants. Death, if you are able to, should be something that you have some say in – whatever that is.

When my time comes. When I run out of medical options and clinical trials, I want to have the option of Aid In Dying. I don’t believe that hospice will be enough to keep my pain under control and I don’t want to be medicated to the point that I cannot communicate with my Son or my family. I don’t want to be under Palliative Sedation because I may not hear my family if they talk to me or feel them if they touch me. Most of all, I don’t want Adam to watch me and my body go through the dying process. I don’t want him to see me in pain. I don’t want him to see me struggling to live. I don’t want him to remember me that way.

I want Adam to remember our trips we took. The fun times we shared together. All of the happy memories he has of us over the years. THAT’S what I want for him to remember.

The week wrapped up with an invitation to be on The Brother Wease Radio Show on 95.1. and an interview with Cristina Dominguez from YNN News that you can see here.

I have called in to radio shows in the past but I was in the studio for this one. It was my first time meeting Rochester’s iconic radio personality! Deanna King and Paul Gugglielmo (PaulyG) were also amazing and super sweet. You can catch the Facebook live video from their page here or you can listen to the entire interview here.

That’s why I will continue to advocate for New York to be the next state to have Aid In Dying laws. That’s why I won’t give up or won’t let anyone stop me.

I am so grateful to Compassion & Choices NY and especially Corinne Carey for allowing me a platform and to be able to advocate with them. If you feel the same way about Aid In Dying laws and want to get involved or help, I encourage you to do so!!  Please visit the following links:

Compassion & Choices NY

Donate to Compassion & Choices

Compassion & Choices  – Main Site

DAMN IT DAWN! WE ONLY WANT YOU TO BE FUNNY!

The following is a Facebook post written by my amazing friend Dawn Lynn Goo. Dawn is a talented comedian and very well known for her brilliant wit and humor. Just like anyone else, Dawn has real feelings and emotions and sometimes between the jokes and the funny posts she drops some serious reality that needs to be heard. This is absolutely one of those times. This is Dawn’s original post. I am also including the link to her post so readers can see the overwhelming outpouring of love and appreciation that was shown to Dawn because of this post. Boy, was it appreciated. Her post was shared 36 times and was shared beyond that. I encourage you to leave a comment on this blog post with your thoughts. I’m sure that Dawn would appreciate what you think as well. Without further adieu…..

“You can’t be sick, you’re fat. You don’t look like your dying. You still have hair. Oh come on, you’ve been dying for years. It can’t be that bad, it’s not like you’re dying tomorrow. At least you have a few years. Stop complaining. Others have it worse. At least you’ve lived your life.”

This is the crap crowding my (Facebook) news feed. Watching my friends hear well meaning people say insensitive things because they lack the knowledge of what they go through.

So, I ask you, are there different degrees of terminal diagnosis? Is one person who manages to live four years into a diagnosis less allowed to be afraid than someone who doesn’t get diagnosed before their cancer has metastasized to their bones, brain, liver, kidneys or another organ?

Are my friends supposed to be less afraid because they managed to have positive results with certain cocktails of drugs, while others have stopped responding?

I wonder if you truly know what it’s like to suddenly feel as if your friends or family have become numb to your plight, and the fears you face on a daily basis.

Has society really become so desensitized that we view cancer patients that have fought for years as lucky, and they should stop voicing their fears? Is the woman of 30 with young children at home, who has stage four metastatic breast cancer more a tragedy then the 50, or even 70 year old woman with the same diagnosis? And are we truly compassionate if we are distinguishing them that way?

I can not speak for the hundreds of my friends on my two FB pages that are dying, because though we all share a similar diagnosis of terminal cancer, each of our bodies, and our fights are individual. Some are at the beginning of their journeys, some are at the end. All of them fighters, each of them warriors, but I can talk of the one thing they each have in common.

I’m not one to sugar coat things, so I’ll just say it. Death. Imagine for a moment, sitting in your oncologists office, and being told that there is no cure for your cancer. That means that despite what you do, how hard you fight, eventually you will either die from the cancer spreading to your organs, or you will die from the treatments, because your body can’t stand the assault of the medications on your system, or like some, your immune system becomes so weak, that an infection will end your life.

You begin the journey of playing Russian roulette, doctors and specialists preparing cocktails of poisons that you pray kill cancer cells before they kill you. You go from having two doctors, to having a slew of specialists, because suddenly your brain, kidneys, liver, or bones come into play. You develop an extensive vocabulary of medical terms, and learn first hand how damaging side effects can be. One day you look down at your medicine cabinet and realize you have more medications for the adverse reactions of the chemo drugs then you do of anything else.

And you get tired. You get tired of feeling as if you have to always be strong for those around you. You get frustrated with people who just can’t understand because they simply don’t get it. If you complain, you feel like you’re letting everyone down. If you, God forbid, entertain the idea of stopping treatment, some will say you’re giving up. Damned if you do, damned if you don’t. And if you’re me, you sometimes feel alone and isolated.

No matter how strong a person is, for me at least, the thought of dying is terrifying. You can try to put it out of your mind, but it’s always there, lurking behind the laughter, popping out late at night when the world is quiet. Some of my cancer friends, like me, are single. Some have children, some don’t. Some have spouses, some have significant others. What they all have in common is that they will die from cancer.

It breaks my heart to see one of my friends feeling defeated because someone has told them they should feel or act a certain way. It makes me angry to see someone post that they think my friends shouldn’t post photos of their surgery scars, or show the ugly side of cancer. Ugly side? Since when does cancer have a pretty side? You must be thinking of those pink ribbons again that have sadly, done very little to help find a cure.

Cancer isn’t pretty. It’s vile, mean, and ugly. It eats away at your body, zaps your strength, and often kills your dignity. It can make you angry, and it steals control over your life.

I understand the importance of not letting it keep you from enjoying your blessings, but you are misguided if you think that cancer isn’t always on our minds. We fear each new scan, because being told a medication is no longer working is heartbreaking. Being told your cancer has spread, is terrifying.

Ask yourself this. What if you went to the bathroom, and when you wiped yourself, you bled because your skin is paper thin and prone to tear? What if your mouth bled and you quivered in pain each morning because putting your dentures in over sores in your mouth that were a result of chemo? What if your skin on your hands was splitting open, and some nights you were in so much pain that there was no comfortable position to get into? What if you everyday you looked at your child and knew you will not see them graduate, or ever hold your future grandchildren? What if you knew the taste of poison or metal in your mouth every time they hooked up your port to run the drugs in, or if you ever had to watch a nurse put on two pair of gloves, and protect herself from the very poisons they were about to infuse into your body, as you stare at the hazardous waste receptacle that everything those drugs came in contact with go into, and suddenly realized that basically they are dumping poisons into your body, well then maybe you’d understand what my friends go through.

Have you ever had a Charlie horse in your face, your inner thighs, between your shoulder blades? I have. Have you ever thrown up blood? I have. Have you ever been so tired and in so much pain that you eye your bottle of pain meds and think, “it would be so easy?” I have.

Nothing pretty or romantic about it. None of us choose to be warriors. If we had a say, we’d certainly not ask to be inspirational as opposed to being cancer free. But we were dealt a hand, and we accept it. We don’t expect you to get it, we only ask that you respect our individual way of handling it. Some of my friends speak out and become advocates for research, some are more quiet. Some share their day to day struggles, and post openly about their pain. All fight in their own way.

It’s wrong to criticize any of my friends for being human. If you don’t agree with what they post, just unfollow, and their posts are not on your news feed, but don’t comment insensitive things just because you think they should behave a certain way.

I have friends on here with terminal cancer, I have friends who have won their battles. I have friends who are planning their end of life care. All warriors, all beautiful people.

I emphasize all the time, be kind. Watch your words, because words can lift a person up, or they can be a weapon with the power to break a person down. Try to understand, that for a lot of us, our pages are a community of support that we simply don’t have anywhere else. You don’t have to agree with what we post, but I think that decency and respect should be a given.

You can’t walk in our shoes, we get that, but please don’t think you have the right to decide our paths. Please stop reporting photos of mastectomy scars as inappropriate, so people’s accounts get suspended, because all you’re doing is keeping a warrior from having support from the people they need.

I have always been honest and open on my page. Some find it redundant, most don’t read my scattered thoughts, that’s ok. It’s cathartic just writing them, just as its cathartic for my friends posting what they do. You can learn a lot about strength from these people.

We are imperfect creatures…yet we’re capable of the most perfect intentions…so be kind. Exercise compassion, even when you don’t understand what the person is going through. Me, I use laughter as a means to make my friends forget for a moment, the thing that rules their lives. I don’t judge a persons choices, or their right to share their thoughts. If I see something I don’t agree with, I simply scroll down. It’s easy.

Isn’t there enough sorrow and heartbreak in the world, that we needn’t add to it by taking offense at something someone posted on line? Is it really necessary to hurt someone just because they think differently or have different beliefs?

I had tears watching one of my friends be attacked because she wanted the right to end her life before being put in hospice. I cried watching one of my friends repeatedly have her account shut down because she posted her photos of her mastectomy scars. And it seems every week I’m in tears because another person has lost their battle, and their account goes silent. We have enough in our lives to deal with, and often, we just want to be heard, to be validated, to know that our struggles mean something.

Now I’m rambling, so I’ll end this rant of mine, and leave you with one last thought, taken from another one of my posts….

Each of us have mountains to climb. The height or difficulty of my mountain, does not lesson the height or difficulty of someone else’s. It’s important that we all remember that, and respect that each of us has struggles, and my pain is no more acute to me, than someone else’s is to them. So I try to practice kindness, understanding, and empathy. There are no bad side effects from that. I really believe, if we were all quicker to listen, slower to speak, and just practiced being kind to one another, we’d all be a little better off.

Dawn Lynn Goo

Dawn’s Original Facebook Post

posted with permission

Patients at Pluta Have a Guardian Angel

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?

On the Road Again

 

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.

tumblr_m5k5mldi9q1rosz13o1_400

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.

15032097_1201583599888652_5823501178166389397_n

 

Adam Rallies The Troops – Brain Freeze for Research!

 

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.

http://13wham.com/news/local/bishop-kearney-seniors-mom-brings-breast-cancer-message-to-homecoming

http://www.rochesterfirst.com/news/local-news/bishop-kearny-launches-scoops-challenge

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…….

 

14700977_1189389854441360_2439247839013382429_o

Even the teachers got into the challenge!

12322940_1189390061108006_634554106633143624_o

The Bishop Kearney Drum Line

14902912_1189389977774681_5174132435324259771_o

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.

Advocacy Stampedes in D.C.

fb_img_1476576999516

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.

20161013_091351

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!

fb_img_1476577012061

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.

fb_img_1476513030942

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.

14589715_725362787617381_8625256674687162571_o

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.

This slideshow requires JavaScript.

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.