Tagged metavivor

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Typing a Tribute to Jenny Pagliaro “Fast As I Can” ~RIP

RIP Jenny Pagliaro. Singer of Roses and Cigarettes. She was only 35. Her song “Fast As I Can” is about living with metastatic breast cancer. She was a sister I didn’t know personally. But I take her death very personally. I’m 53. The same beast that tried to kill me 10 years ago, killed her today. At 35. I’m not OK with that. With any of it.

Everybody knows that 1 in 8 women will get breast cancer in their lifetime. I am one of the 1 in 8. But not everybody knows that 3 out of 10 of those 1 women in 8 (that’s 30% of all initial breast cancer diagnosis regardless of stage) will have a breast cancer recurrence, become metastatic, become one of the 113 women who die every day in our country. If you are inside the breast cancer world, it feels like everybody outside the breast cancer world thinks that since we all think pink in October, that we got breast cancer “handled”. I doubt Olivia Pope would consider the situation handled.

I keep posting about my friends keeping on dying cuz they keep on dying and I am a witness to their lives and they will not go softly into the night if I stand up here on this platform and say there name out loud and proud, do my part to pay forward my own good fortune by helping keep their memory alive.

Today Jenny Pagliaro is one of the 113 women (and #mengetbreastcancertoo) die from breast cancer every day in our country. There are 112 more women, who are not famous rock stars who wrote uber fab breast cancer anthems, that will die from metastatic breast cancer. Just like Jenny Pagliaro. But without the fanfare. It will not be on the evening news. The world will not notice. Except we in the breast cancer community will notice. We feel each one. We all know many of them. Some of deeper in the breast cancer movement have people they know and love die everyday, sometimes more than one friend a day. We all know it could be us. We don’t have breast cancer handled. It is NOT a manageable disease.

It’s not a fluke that Jenny Pagliaro or any of my friends who die on a given day, die on any given day. It’s what cancer does. It has one job, and it does it well. Approximately 800 women (and men) get breast cancer in the US every day, and 113 die every day. We haven’t done much to change those ugly stats. Pink has not handled cancer.

Metastatic breast cancer research is where our focus needs to be. UCLA Metastatic breast cancer researcher Dennis Slamon’s discovery of the targeted immunotherapy aka Herceptin is the only reason I’m sitting here typing these word. It used to be 100% fatal kind to get. His work was focused on metastatic breast cancer patients without any options remaining who had all been told to go home and get their homes in order. He took these “hopeless” cases, gave them hope and Herceptin, and ended up turning the tide for Her2 breast cancer patients like me. Before we didn’t have a bullet against the beast. Now we have a bullet. So far, so good, mine’s been a silver bullet.

But my point is, we need to do this with all the cancers, not just breast cancers. This is where we need to be putting our monies, into metastatic cancer research. The #truthbomb is, if we cure metastatic cancers, then it becomes a manageable disease cuz nobody is dying from it. Then we are “handling” it. I recommend METAvivor Research and Support Inc. 100% of everything they raise goes to metastatic breast cancer research. The kind that kills. The kind we should be focusing on. They are focusing on it. They got one job and I believe they are gonna do it.

Meanwhile, Pagliaro’s song “Fast As I Can” resonates deep with me today.  Here’s a really good Billboard article about her. Here are a couple quotes I pulled outta it that hit me where I live as fast as I can.

“The upbeat, twangy songs message about living life to the fullest shines through, even as it chronicles Pagliaro’s frequent hospital visits for cancer treatment.”

&

“This song was written about my battle with stage IV breast cancer,” Pagliaro told Billboard at the time. “It’s about not letting the biggest challenge you’ve ever faced stop you from living your dreams.”

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Sending Love & #goodjoujou To Olivia Newton John and Flipping Off Cancer

                              20 years:(
                            #fuckcancer

I have my quarterly oncology check up coming up next week.

THIS. is just another reason why, once the #pinkmonkey has jumped on your back, the damn pink monkey is always on your back. Always.

Practically everybody knows the stats that 1 in 8 women will be diagnosed with breast cancer. But the collateral damage from all the pink is that too many peeps believe we are done (even though pink means rare) and breast cancer is now a “manageable” thing. That just because we who are the 1’s in 8 have a whole month dedicated to us, that breast cancer is the good even lucky kinda cancer to get. Cancer is an insidious bastard and there are no good kinds. Even if you get a whole month filled with bottomless pink buckets of fried chicken dedicated to your cancer like I get with mine. Even if all the chicken BREASTS in the buckets don’t seem the most sympathetic kinda “support” for “aerodynamic” breast cancer peeps like me. But I digress.

1 in 8. That doesn’t seem like a lot if you are in a room with me. And I don’t mind taking that bullet one bit for you. I love you and hope you never have to join this damn exclusive club.

But here’s the thing. Whenever I’m in a room with 9 of my fellow 1 in 8’s, stats hit the fan like #shithitsthefan. To the point: 3 out of 10 of us who have been diagnosed with breast cancer will recur and become metastatic aka #stage4. There is no cure for stage 4. And there is no stage 5.

30%. Not manageable. Not good. Not lucky. Yeah, it’s better than a coin toss. Unless you already rolled a 1 out of 8. Like I did. And like my 9 friends in the room did. That’s why the odds don’t always feel like they are with us. That’s why the pink monkey always is. On our backs.

I was so superpower sad to see that Olivia Newton John has, after 20 years remission, recurred and gone metastatic. #fuckcancer She will be in my prayers, with all my other friends who also have to fight that fight every damn day of their lives for the rest of their lives.

That’s not OK with me. And the #truthbomb is that until we do something different with the way we fight breast cancer, 3 out of 10 of me & my gang, regardless of how aware we were or how early our diagnosis, will experience recurrence.

Now, I’m not against awareness, at all, so don’t get me wrong here. But it seems to me the shift that needs to happen in the way we fight breast cancer is a shift toward the other end of the spectrum, not taking away from awareness, but a laser beam kinda focus on #metastatic cancer, on curing the kind of cancer that kills. Would 30% be too much to ask, if you or someone you knew was in the 30%? Cuz here’s the current situation is that, of all the monies raised to fight cancer, only 7% goes for Metastatic research.

7% #wtf?! #amiright?! #notok #stage4needsmore #moreresearch #dontignorestage4 #thereisnostage5