Estimates Are Better Than Nothing

I need to talk about something that’s been really nagging at me. Please hear me out. Disclaimer: I’m a wee bit fired up, so don’t say you weren’t warned.

I’m not going to beat around the bush. The last week couple of weeks, and I’m still struggling to understand why, there were a pocket of individuals that seriously took exception to the use of certain Metastatic Breast Cancer numbers and statistics.

First and foremost, before ANYONE gets their fur raised: Yes, I know and agree that the SEER database is flawed. The database hasn’t and still is not correctly counting/tracking breast cancer patients that Metastasize. They are ONLY counting those patients diagnosed from day one (de Novo). Additionally, there’s the other question of how the MBC deaths are recorded. Is the death certificate correctly reflective of cause of death or a secondary complication? That could also have an impact on the true count and tracking of MBC patients.

Howthefuckever – bottom line, we can ALL agree, myself included, that we currently do not have a perfect study, calculations, formulary or recipe that will give us exactly perfect-on-the-nose-without-a-doubt figures for “the numbers.” We can agree on this, yes? Good.

Now that that’s out of the way….

Due to the above, (what we all just agreed upon), there are ESTIMATED numbers and statistics that are used among Oncologists, researchers, advocates and literally anyone in the medical field to demonstrate certain facts regarding BC/MBC. Let me say that again. There are ESTIMATED numbers and statistics that are used. Are these numbers perfect? Please refer above for that answer, we just covered that.

Estimated Number of Deaths

ACS does a through job of putting out estimates every year for estimated cancer statistics for all cancers. Including estimated number of people going to be diagnosed, estimated number of people that will die, incident rates and so on. It’s broken down per state and for the entire US.

Percent of Recurrence

While this issue with SEER exists, some study’s have been done to tackle this. However, this one is a huge trigger. Most curiously it’s with MBC Patients.

Beth Caldwell referenced one such study in her blog. In the 2013 study that focused on HER2 status on recurrence, it was concluded that it could be as much as 36% recurrence up to 12 years.  MBCAlliance, MBCN and METAvivor all align with an estimated 20-30% recur. Christina Curtis at SABCS presented a slide in front of hundreds that also referenced “20-30% of patients will recur with metastatic disease.” For those that weren’t in that conference Hall, not a single person stood up to correct her or question her on that statistic. I was there. It didn’t happen.

So, it’s 2019 and we have some new numbers, Here’s what we have according to The American Cancer Society.

  1. An estimated 42,260 people will die of MBC.
  2. An estimated 116 people will die every day from MBC
  3. An estimated 20-30% of those diagnosed with early stage disease will recur as metastatic – up to 20yrs after successfully completing treatment

Everyone wants to have correct data. No one wants to be caught talking out of their ass. More importantly, true and correct data is critical to researchers working to save lives. But, Like it or not, those are the estimates used and will continue to be used by the majority of people speaking for and about BC/MBC.

Now, just because these are estimates, that doesn’t mean organizations or individuals can just DECIDE to change or skew them to suit their agenda. It doesn’t mean it’s OK to dumb down the urgency that advocates have been pushing for. And it doesn’t make any sense whatsoever for other MBC patients to demand other patients/advocates to produce study’s or data to prove the numbers that we post about. THAT’S NOT THE POINT. At the end of the day, Advocates are working in the field, traveling, trying to move the needle for EVERYONE. Is nitpicking about how we don’t have accurate data, something we already are painfully aware of, something we want to waste energy on between each other?

After this week, I am officially done justifying my use of numbers/statistics that are widely used. We all have more important work to do. It’s January folks. We have a long year ahead and no one knows how much time any of us have.

Let;s make this year count.

San Antonio & Setting Goals

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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The Good News and Everything Else

The last few months have been busy. Lots of traveling in-between medical appointments and tests.

All the gallbladder testing and imaging did not turn out as expected, which in this case, is good news. There are no plans to remove it. It appears to be working just fine. Unfortunately, not much else has changed, so my GI doc (Dr. D) has put plan B into place. I’ll get into that in a bit.

Last month, I spent a few days in N. Carolina to take part in an advocacy project for METAvivor called The Serenity Project. It has two parts – an interview and an artistic part. The ‘artistic’ involved being in and underwater which was challenging. I sure no one wanted me to drown, but there were some times I was wondering….I’m JOKING. The entire project includes 10 Metastatic patients in all and will be debuted in December at the largest breast cancer conferences of the year, The San Antonio Breast Cancer Symposium (SABCS).

In addition to the “work” of the project, there were some fun things that had been planned, like yoga on horseback – yes, I did yoga on a horse. I also learned how to groom a horse too! Having never been on a horse before or even around them, I was excited to do this. Of course, the horse I ended up with was ‘hangry’ and wanted to do nothing but graze. She finally calmed down after she ate a bit of grass.

Shortly after coming home, I was back on the road to NYC. It was time for my 6 month PET/CT scan and check-up with my Oncologist. More good news, scan still showed no new evidence of disease.

Once my appointment wrapped up, hubs and I were back on the road to take a much-needed break in Florida. There is nothing better than morning walks on the beach, feeling the sand in your toes and finding shells along the way. If there is something better, I don’t want to know about it.

Now, for the ‘other’ or that Plan B I mentioned earlier.

The main issues are that I can’t stop losing weight and I have significant pain every time I eat. I must have another ultrasound of my abdomen and an upper GI with barium (yum). Dr. D also put me back on Omeprazole to make sure it’s not GERD, something my Oncologist at Sloan brought up mainly because I’ve had that issue before.

If all of that is negative, exploratory surgery is next. In anticipation of that happening, I have a consultation with a surgeon. If it were up to me, I would skip the tests, jump right to surgery and get to the bottom of this crap.

Then he hit me with this….sigh…I have about 10lbs wiggle room but that’s about it. If I continue to lose weight and get to or below that 10lbs, we will have to have conversations about a feeding tube or a PICC line for nutrition. (Link included to explain what all that is). That’s a hard pass. Nope. No thanks.

So that’s what’s happening and where things stand.

As for where my travels are taking me next, I’ll just leave this here…..

I Still Have Work To Do

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

Wild Hearts Can’t Be Broken; They Just Get a Little Cracked

The last 5 years I have been living my life straddling a fence. I fight every day to stay balanced. Steady. On top and moving forward trying to live my life while also making some kind of difference.

There are days when I don’t feel well or I have side effects from treatments. I struggle to keep my balance. Then there are days when news of a another life stolen from this insidious disease makes it way through friends and social media like a sick game of telephone. Its all I can do not to fall flat on my ass onto the ground.

Last year, singer/songwriter P!nk released a song: “Wild Hearts Can’t Be Broken”. I’m sure she had her own reasons for writing this song. Clearly, it’s not because she knows me or understands what a day in the life of any Metastatic Breast Cancer advocate is like, however, that is exactly what this song is to me.

“I will have to die for this I fear

There’s rage and terror and there’s sickness here

I fight because I have to”

The American Cancer Society estimates that in 2018, 41,400 men & women will die from MBC. That number hasn’t decreased in over 30 years. But that’s not widely talked about.

The only way to see that number move in the other direction is to actively fund meaningful research that will focus on Metastatic disease and drugs that offer longer progression free survival.

“There’s not enough rope to tie me down

There’s not enough tape to shut this mouth

The stones you throw can make me bleed

But I won’t stop until we’re free

Wild hearts can’t be broken

No, wild hearts can’t be broken”

Over the past 5 years, I have held several fundraisers benefitting the only two organizations that exclusively fund metastaic breast cancer research. I have traveled to Washington D.C. three times to help organize and participate in public demonstrations to raise awareness. I’ve spoken to lawmakers and I am vocal on a daily basis on social media. If it’s going to make any kind of impact, I’ll do it. If it could potentially save just ONE life – ONE. I’m there.

You bet there isn’t enough rope, chains or straps to tie me down. You’ll never find any tape or glue to shut my mouth. (Ask my family – they’ll vouch for the mouth).

Sure, there will be people that may say “why bother, it’s too late” or “Go out and enjoy the time you have left; stop focusing on ‘cancer'” To those people my message is simple: I’m not just doing this for me. I’m doing this because I need to make sure my future grandchildren won’t ever have to worry about this.

Wild hearts can’t be broken, but every time another friend dies, tiny cacks appear. Those cracks are there to remind me and the rest of us that tirelessly advocate that it’s essential and to keep plugging along.

This song is my battle cry. It’s what motivates me when my headspace says I can’t. It’s what I listen to after learning of another death.

I owe P!nk a debt of gratitude for writing what feels like an anthem for all those living with and madvocating for a terminal diagnosis.

Should anyone happen to run into her, please pass that message on to her.