Community

Sometimes It Takes A Village

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There are certain times in our lives when we can’t do it all on our own. It can be very frightening, especially when your life is literally on the line. What started out as dire situation last Friday afternoon, for my friend Amy, ended up being a testament to how people can pull together and help their fellow man (or in this case – WOman) simply because their story was shared through social networks.

Here’s what happened…..

Last Friday afternoon, I received a text from my friend (and fellow MBC sister from another mister) Amy. After a bit of texting/venting, the situation was this: Amy had been accepted into a clinical trial at Weil Cornell in Manhattan – which is fantastic because Amy’s breast cancer had now progressed to her brain and there are few if ANY clinical trials for cancer patients with metastisis to the brain, let alone trials specifically for MBC patients with brain metastisis – so this was a BIG fucking deal. The issue at hand was that she had just been informed she had to return to Cornell that following Monday (2 days) to begin the trial and she had to stay for five days.

It’s December. It’s the week before Christmas. In Manhattan. Do the math.

:Breathe:

Amy had already called the American Cancer Society. The Hope Lodge was not an option as they needed more than 2 days notice & they were full. That’s helpful, right? I suggested she call back and inquire about another program they have called Keys of Hope and while she did that I would check on a ‘few things’. I may have lied – a little. What I actually did was the only thing that I felt was going to give Amy the best possible chance of finding someone anyone that had a suggestion, a link, an idea or something:  I made a video and posted it on Facebook. If you know me – really know me – you’d know that I am not comfortable making ‘impromtu videos’ for social media. Public speaking and interviews, sure – IF I am prepared. Off the cuff videos, not so much. But this was important and not about my comfort level. ugh  video

It wasn’t long before friends were sharing the video on their pages, in groups, and tagging friends that might be able to offer suggestions or even help. As much as social media can be a detriment it can also bring out the very best in people – all working together because someone is in need. This was one of those times.

Angels Do Live Among Us

Not thirty minutes after posting my plea for help, I was put in touch with Tracy Milgram thru METUP Board member, Abigail Johnston. Tracy is the founder of BRCAstrong,  a non-profit organization that supports and educates Previvors and Survivors. Tracy’s organization recently partnered with PALS – Patient Airlift Services. PALS, is a non-profit that provides free air transportation to medical treatments/appointments to those patients in need. Tracy was confident that through PALS, Amy would be able to get transportation to her clinical trial and have one less thing to worry about.

WHAT?? I immediately started texting Amy while I was messaging Tracy on Facebook. Multi-tasking! Soon Amy was talking to Tracy and working out the details of her flight.

I went back to Facebook to check notifications, comments and suggestions about lodging for Amy. Everyone was being so helpful. There were attachments with lists and websites, names of other people to contact AND THEN…….

Almost at the same time, I received a message via Facebook and a text. The text was telling me that someone was trying to reach me and the message on Facebook was from that person trying to reach me asking me to call her. I called Sara (I am changing her name per her request). Sara is someone I know in real life. I met her this past summer. I can’t say enough about her – love her to pieces. As Sara and I were talking she told me she saw the video and she couldn’t not help. I told her Amy has transportation secured thanks to Tracy and PALS and the only thing we were working on was lodging.

Then Sara said this…..

I want to pay for Amy’s hotel

OHMYGOD!! I cried. Amy was all set. She was going to be at her clinical trial on Monday.

I hung up with Sara and called Amy. I will never forget the sound of joy in Amy’s voice when I told Amy she had to call Sara immediately and why. It was a combination of surprise, tears, relief and laughter. It was the absolute best sound ever.

There was only one thing left to do.  ugh.

(And now you know why I don’t make videos. Can you say “Hot Mess”??)

It was a long afternoon. It was a stressful afternoon. But it is true, sometimes it does take a village. On December 14th, that village rallied for Amy and took care of one of it’s own. I am happy to report that Amy has spent this past week in NYC getting the treatment she needs in the clinical trial that will eliminate the little bastards in her brain and keep them from returning.

Thank you to everyone that shared the initial video, tagged friends, sent me messages and offered suggestions. This is the power of community and how the connections we make, the people we meet; we never know how important they may become or how big of a role each of us could play in one another’s lives. Those of us with metastatic cancer knows how much time we have; using that time to help where you can and work together is so much more fulfilling. I especially want to express a heartfelt, huge thank you to: Tracy Milgram, BRCAStrong, PALS and Sara or as I collectively call them angles on earth without whom none of this would have been possible. 

My dearest friend Amy ~ I love you so much and when you get back home….                   you owe me lunch.

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brcastrong
BRCAStrong – #UnBRCAble

 

San Antonio & Setting Goals

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I have so many thoughts swirling around. It’s been a minute since I’ve written. Every time I’ve tried to carve out time, something else takes my attention.

When I started writing this I was on a plane. In the middle seat. I loathe the middle seat. I have claustrophobia issues. I was on my way home from a week in San Antonio; attending The San Antonio Breast Cancer Symposium. I had been trying to get there for 2 years. This conference is the largest conference dedicated to all things Breast Cancer. Researchers and Oncologists from 90 countries present results of trials, studies, data they’ve worked and collaborated on. You name it – they were probably talking about it. It’s basically a “who’s who” in the Breast Cancer space. Five days – from 7am until 10pm.

This being my first year at SABCS, it was also my first time representing METUP in my official capacity as President at a conference. METUP has been going to this conference for the last three years. Each year included a silent protest where signs are held outside the most attended session of the conference which happens to be where the Komen Research Award winners are presenting. This year would be no different.

The signs always conveyed a clear and concise message directed at researchers. Previous messages were: “Cancer Doesn’t Discriminate Neither Should You” “Help Us Help You” “Metastatic Research Now” “Silence = Death”

This year we had two messages. Our signs had a message on both sides: “We Need Years, Not Months” “Do What’s Right, Not What’s Easy”

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METUP Protest – SABCS18

We received so much positive reinforcement & feedback. We even had one person join in and hold a sign with us. Afterwards, I was told by one person they disagreed in our choice of timing for our protest. That’s why it’s called a protest. History has shown, however, that change doesn’t come from waiting for it to happen. Change occurs when you take action to make it so. It’s especially important when my life is on the line – even yours.

I’m extremely proud of what METUP has accomplished since I’ve come back to the organization. We held our 4th and the most successful Die-In in Washington D. C. this past October. We’ve added a Diversity Coordinator & a Compliance Coordinator to our team and we closed the year with a protest that grabbed the attention of some impressive people in the medical community.

Aside from all the fascinating information learned from brilliant individuals from all over the globe, it’s the best opportunity to meet “IRL” and catch up with the friends you’ve made on social media platforms – most notably Twitter. (#BCSM shout out!)

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#BCSM Live

Many great connections were made. Constructive dialogue took place all week; with the anticipation of fostering new ideas into action.

As a new advocate to the symposium and not a grant recipient from the Alamo Foundation, there was a glaring absence in access to information. If you want to attend general sessions, exhibits or posters – all of that information is clearly available either online or in a downloadable app. What’s not available, is information for sessions designed specifically for patient advocates, “hot topics” or panels. Invitations that come via email don’t go to all patient advocates. It all ends up being conveyed by word of mouth once we’re there. IF we’re lucky.

So, San Antonio Breast Cancer Symposium – if you’re reading this, I have some suggestions to make the conference more “Patient Advocate Friendly”:

  1.  Update the Advocate button on your app with actual information about conference events instead of the Advocate webpage which is useless.

  2.  Have a room for Patient Advocates where we can take a breather if we need to. These are long days. Metastatic Patients, Patients out of treatment get tired and we don’t all stay close by. Finding a place to sit is very challenging. This would be so helpful. Especially if the shuttle busses aren’t going to run all day.

  3.  If you’re going to send email invites that are for ALL patient advocates – send them to everyone. Don’t send them to some and ask them to finish your job by “passing them on” it’s not always going to happen. People will feel left out.

  4.  Currently, there are Hot Topic dinner meetings, which is great. Perhaps, add Lunch & Learn topics (in that Advocacy Lounge I suggested in #2) for those that just can’t stay until 5/6pm.

Just my two and half cents. Think about it.

It was extremely bittersweet at the end of the week. Saying goodbye to friends always sucks after spending so much meaningful time together. It’s much harder when you know the following year, not everyone will be returning and (not to be a wet blanket) it could very well be me. With that in mind, your friends hug you a little harder and a little longer and you both cry a little; while insisting each of you will be back to do the whole thing again next year. Hopefully. Maybe.

METUP has some lofty goals for 2019 that will be sure to raise eyebrows and get some attention but with our team, a growing base of volunteers and a lot of fundraising, nothing is impossible.

“You may never know what results come of your actions, but if you do nothing, there will be no results.”
― Mahatma Gandhi

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I Still Have Work To Do

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Five years ago this August, I was told I had 2-3 years left to live. Five years ago I wasn’t ready to die. Today, I’m still not ready, but it’s not up to me; so until that day – I have work to do.

When I look back over these years since cancer invited itself into my life, it’s a tapestry of faces, friendships, events, gatherings, meetings, and experiences that literally takes my breath away. I have a very difficult time reconciling the fact that none of these things would have happened and I never would have met the people I’ve met had it not been for cancer. I didn’t want it then and I sure as shit don’t want it now. But I can’t have one without the other. If there is a God or higher power, he or she has a really twisted sense of humor.

In the world of cancer, especially early stage Breast cancer, doctors tell patients that once 5 years “no evidence of disease” is reached, you’re allowed to exhale. When you have Metastatic disease and you’ve lived 5 years, you’re basically living on borrowed time. I am extremely fortunate that I have had a good response to the treatment I’m currently on, however, my eyes are wide open and I am fully aware that at anytime this could change. I am now racing to beat a clock that’s ticking down to an unknown time that will only be revealed in the moments before the big hand strikes twelve.

I have been a vocal advocate for Metastatic Breast Cancer for damn near all of these 5 years. I’ve shouted on my own. I’ve lent my voice to others when needed. I’ve been part of new projects. I’ve helped launch grassroots activist organizations.

Through all of these things, I’ve met, worked with and learned from the most amazing people. Many of whom have since died. Each person has left a footprint on my heart. One individual in particular not only left a footprint but she also took a chunk of it with her when she left us.

Beth Caldwell is that person.

In the months before Beth died, we spoke frequently about how we needed to keep advocacy and activism at the forefront. We were making plans to meet at the last big conference of the year the San Antonio Breast Cancer Symposium and discuss a plan to keep moving forward. Sadly, that meeting never happened.

As most people did, I respected the hell out of Beth. I still do and always will. More importantly, we were on the same page of the same shitty book when it came to what we felt needed to happen. We needed to shake shit up, make noise, storm the gates and take no prisoners if we wanted people to hear us and help save us. Enough was fucking enough. Lives are at stake – our lives. When she asked me to help get METUP off the ground, I was all in. When I stepped back to pursue other projects, I continued to support Beth & METUP. Beth was a force. Beth roared and people listened. She roared until she couldn’t.

It’s important that Beth’s vision continues. She worked too hard, for all of us, for the ball to get dropped now. I can’t let that happen – I won’t. I know she’d kick my ass if I did and I’m not ashamed to admit I’m a little afraid she’d come back and do it.

That being said, It’s my intention to use this borrowed time to do Beth proud. I will be taking an active leadership role with METUP.  It’s my intention to help grow the organization with active volunteers so we can continue to address the important issues facing Metastatic patients through direct action.

I encourage anyone that is interested in getting involved with METUP or those that want to learn more about what METUP is all about go to METUP

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

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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