stage 4

Just When I Thought I Was Out….

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Last July, the last time I published a blog post, I talked about how I was ‘breaking-up’ with advocacy. Between the pandemic and the death of my partner in crime, Tori Geib, I didn’t have the stomach for it the way I did in previous years. The constant (it sure felt constant) petty drama between advocates was also pretty draining. In addition, my son graduating from college, his wedding, and the announcement of their first child. My priorities had shifted.

Since January 2022, my life has revolved around my perfectly perfect beautiful peanut of a granddaughter, Piper. I had no idea my cold black heart could love a tiny person I didn’t personally birth as much as I love her. She smiles SO big I literally could cry. I shouldn’t know her and for reasons I may never understand, the universe had other plans. I’m super cool with that.

Kathryn & Beautiful Piper

But I digress…..

Then on August 8th, they pulled me back in. An iconic celebrity, Olivia Newton-John, died from Metastatic Breast Cancer. It was widely known that she had been diagnosed in 1992 with breast cancer. She went through all the standards of care – mastectomy, chemo, and reconstruction. She was considered ‘cured’ (insert eye-roll). In 2013, she discovered cancer had spread to her bones. Specifically, her shoulder. Then in 2017, metastasis was found in her spine. It was then, in 2017, that Stage 4 was mentioned, but let me be clear – Olivia Newton-John was diagnosed with Metastatic Breast Cancer in 2013. The same year I was diagnosed. However, when she died, the media reported she had a 30 yr (choke) ‘battle’ with breast cancer. I had expected to see battle language from the media but what I didn’t expect was all the inaccurate information that followed. Dame Olivia did not have active breast cancer for THIRTY YEARS. There were 21 yrs that she had no evidence of disease – meaning she was not in active treatment. It was only in 2013 when cancer metastasized to her shoulder and again in 2017 when it spread to her spine did she have active cancer.

The media reported that she had ‘spine cancer’ or she died from breast cancer when it was metastatic breast cancer. Words matter here because breast cancer that doesn’t leave the breast isn’t lethal. When it spreads to a major organ like bones, well, then it’s incurable. It’s Stage 4. There isn’t a Stage 5. Reading all of this inaccurate information made my head want to explode. I couldn’t hold it in. I couldn’t stay silent. So, I took to Twitter and created a thread of five tweets to make some points clear. I had no idea that almost 15K people would end up seeing that thread or that it would be re-tweeted 60 times.

https://twitter.com/stickit2stage4/status/1556765429112229890?s=21&t=JdoiMs1I29y2aAqZnWq_xA

I definitely didn’t expect to get an email from journalist Beth Greenfield, Senior Editor at Yahoo.com on August 10th. She saw my tweet thread. She wanted to talk to me. It took me 3 seconds to email her back. I am no stranger to interviews. I know that sometimes what I want to be included and published doesn’t happen. We talked later that day. She truly understood where I was coming from because she had lived through a breast cancer diagnosis. I felt really good after our conversation. While I wouldn’t know for sure until I read her article, I was confident that she wanted her readers to understand what I was trying to convey on Twitter.

The article came out late on August 17th. I didn’t see it until the following morning via a tweet from a friend and fellow advocate Jo Taylor. I am super proud of this article and cannot thank Beth Greenfield enough for writing it. What I am most proud of is that she included the organizations I told her about that the public should seriously consider if they want to help further research for metastatic breast cancer. Those organizations are: BCRF, Metavivor & The Cancer Couch Foundation

I haven’t changed my mind about actively advocating. While I did get worked up over this ridiculous confusion about metastatic breast cancer, I don’t have the bandwidth to get back into being an advocate and traveling full time. I plan on spending time with family, my husband and (as much time as possible my kids will allow) with Piper.

If you missed it, you can read the article featured in Yahoo Life

Let’s Talk About Bucket Lists

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Bucket lists.

They’ve always made me itch. From time to time I’ll hear friends talk about making their list or they will post pictures with a lead in of “Well, I checked this (whatever ‘this’ is) off my bucket list.” I immediately think about what happens when they finish the list or worse; they don’t get to finish because their health suddenly takes “that turn” no one wants to happen. Because of that, I’ve associated bucket lists with bad karma and never really put one together. I’m already living on borrowed time, why would I wag my finger in the face of fate just begging to get a clap back?? Ask anyone, I can be a pain in the ass with the whole – “no one’s going to tell me what to do, if I want to do it, it’s happening” but this is a whole other animal and I don’t think I’m ready to poke that chupacabra. Know what I mean?

All that being said. I still don’t have a formal list. Not even a Post-It note. However….

There has always been one thing, just one, that I’ve wanted to do. Even before cancer became my dark passenger. I had even kind of resigned myself to the fact that it wasn’t going to happen.

Then . (holy shit) . It . Happened.

What I consider a once in a lifetime opportunity landed in my lap to go home. Well, not where I grew up, but close enough. San Francisco, California. This was huge. I haven’t been home in 25 yrs. I truly believed I was going to die from this hideous disease without ever going back. The ironic thing is the way it worked out, I missed my 30th High School class reunion by four days but that was OK. Totally, absolutely, 100% fine.

This past Wednesday, two days ago Wednesday, I got on a plane and flew west. It was surreal. It really didn’t hit me until the plane touched down. As the plane taxied in and as I looked out the window, the familiar mountains in the horizon was like a hug to my senses. I cried. I cried the same way I am now typing this on the plane back (looking absolutely ridiculous to anyone that may catch a glimpse of me. I need a damn Xanax)

Oh those mountains

San Francisco Neighborhoods are Awesome

I only told one person I was coming home. There was only one person that was important enough to occupy the precious time I had. I only wish it could have been two. Both classmates. One from elementary/junior high and the other from high school. Unfortunately, Laurie, my dear friend from elementary school tragically died in 2011. That will always be my biggest regret, not coming back in time to see her.

I was able to give the biggest hug to Melanie. She’s no slouch giving hugs back! We had the best time catching up and hanging out. It was like I’d never left. Kind of. We ended up at at a casual neighborhood pub that made the evening even more memorable. We had no idea we walked in on trivia night. We opted out which lent to even better comedy. (We were compared to the old men on the muppet show but in a good way – I swear).

Our “30th Reunion”

It was the most amazing trip. I cannot emphasize this enough. This was everything.

I still don’t have a bucket list. After this week, I honestly don’t need one because I completed it without ever needing to make one.

To those that made this all possible (the whole thing), I could spend the rest of my days thanking you and it truly wouldn’t be enough.

Seriously, Thank you.

Advocacy Stampedes in D.C.

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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.

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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!

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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.

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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.

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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.

Viewpoint with Ken Rosato

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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.

http://abc7ny.com/society/new-york-viewpoint/32277/

Nope, Not Worried At All

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Last I updated, I was headed for a biopsy of my lymph nodes under my left arm and a biopsy of my ribs on the right side where I have had a large hard visible growth that is quite painful.

Both procedures were done on the same day and I was home by 2pm on June 2nd.
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The rib biopsy was by far the most painful. More painful than I remember it being. The “twilight” meds didn’t work and I was awake for the whole thing causing them to have to give me 3 doses of Fentynal because I could feel everything. My tolerance to pain medications is quite ridiculous. But boy did I sleep once I got home!

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I finally met with my Oncologist this past Friday.

The rib biopsy showed that I have a large collection of scar tissue from radiation therapy of my 9th rib from 2yrs ago. Per the Radiation Oncologist, side effects from radiation can continue long after radiation has ended.  There is no active cancer.

The lymph biopsy showed only lymph cells and no metastasis. This was very surprising but also a relief. Because this was something that showed up on the PET scan, I was pretty confident that the biopsy would be positive for cancer. My Oncologist’s exact words to me were: “We are cautiously optimistic but we will be keeping a close eye on this area going forward” Um…Ok. No so reassuring but not much I can do.

I’m still losing weight. Down another 5 lbs and to deal with that we are adjusting the Ibrance down from 125mgs to 100mgs. This should have no effect on the drugs fighting the cancer but more on the side effects of nausea and lack of appetite. 

Today, I received my tumor marker results. The one we watch closely is CA 27.29. Anything under 40 is considered normal. My number has been slightly over 40 for 3 months. This is significant because my number has been under 40 for over a year. Today, it jumped to 51.
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I know some will say that 51 is still pretty low and it is. I know some people that have their numbers jump up 2 or 3 HUNDRED points. But everyone is different and everyone’s numbers are significant to themselves. The fact that mine haven’t ever gone up like this and you add on top of that a suspicious PET (that for now is OK but we’re going to watch). I’m not feeling very good about this at all.

I said this back in May in an interview in Albany and I’ll say it again: “My prognosis is only as good as my next PET Scan”.  I’m very worried about my next PET Scan. A lot can go wrong in 12 months and I’ll be damned if I allow any of it to happen.

I have a graduation to go to.
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A Very Special Day

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Today was a very special day.

As parents we ‘check of’ the various milestones our children reach and make mental notes of those that have yet to come. When you have a terminal illness you find yourself playing a kind of ‘beat the clock’ between yourself and these milestones. Hoping that you’ll still be around to see all of them just as you would if you weren’t sick. Except the milestones become that much more bittersweet. (Will that one be the last? Will I be well enough to see the next one??)

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Today was one of those milestones and not only was I there for it but I felt good. I felt like every Mother should on this day: full of excitement, anticipation and a stomach full of knots.

Today, my Son took his road test to get his Drivers License.

He was SO nervous. He made me wake him extra early so he could get in a few extra parallel parking practices. He didn’t need it but I indulged him.

As I watched him drive away for the test, I flashed back to when I let go of his two-wheeler and he rode his bike without falling. He was doing it and I was here to watch just like before.

The whole test took 7 minutes but it was the longest 7 minutes of my life and I’m betting it felt a whole lot longer for him. While I waited for the DMV Rep to finish the paperwork I caught my Son’s eye and he gave me the ‘nod’ that told me he passed. It was all I could do to hold in the tears.

After all the phone calls and text messages were made telling the good news, I let Adam drop me off home and allowed him to drive to school and work…..alone. He earned this victory drive. I did make him promise me to let me know he made it safely to school since I wasn’t riding shotgun.

Fifteen minutes later I recieved this text message:

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Oh, how I love my sarcastic smarty pants child.