Reflecting on Pinktober 2024

A Breast Cancer Diary

Today I'm just reflecting on how Breast Cancer Awareness month has gone for me personally this year. I hope it's been a good one for you!

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Transcript:

Today's the last episode in breast cancer awareness month, 2024. And so I just wanted to do a special episode reflecting on my personal experience this year in October, Pinktober. I don't feel like I need to recap on my interview with Marina Blackford, which was my last interview. She is such a master educator that she defined all of the terms well, and I don't feel like there's much to say to clarify.

except to remind you that she is going to be in the New York city marathon on November 3rd. so just about a week from when this airs and she will be on Instagram at her name, Marina Blackford, all one word, um, posting photos of that. So if you want to support her, cheer her on, follow her and see her photos, be sure and look for her at Instagram.

But, uh, this being the last week of October, I am pretty wiped out. I don't know if you're watching this on YouTube right now, but if you are, you could see that I'm pretty tired. And today I leave for a four day, three night reunion retreat with some of my closest girlfriends, celebrating 20 years of friendship.

And so that seems like a really good way to cap off this October, uh, out at the beach. Just, you know, Laying around at the stormy rainy Oregon coast so we're going to be out at cascade head this weekend when this podcast goes live and That's a really really fitting way for me to end because I have had such a busy and eventful and Really prosperous month this month, just like last year.

So the main thing when I reflect over my month is that I've I've been thinking about how important it is every year to meet new breast cancer patients and new survivors and people who will become leaders in our community. I will also meet people who will not become leaders or who aren't even interested in sticking around in the breast cancer community.

But, This month I met quite a few that I think will be sticking around and who will become very influential leaders people who are willing to speak out and change our norms and challenge our systems. And so that's the most hopeful and encouraging thing that's come out of this breast cancer awareness month for me.

While I was down in San Francisco during my half marathon, I met a doctor who was a flattie and a lobular survivor. So she had my two things. That I'm really passionate about advocating for in common and she's a doctor and she's connected in her community of physicians. And so that was the most hopeful thing just to hear how passionate she is and how determined she is to be vocal about her experience and to help change the way that we deal with especially lobular breast cancer being underfunded, under researched.

The second thing that I'm most excited about this month is that I started a pilot project here locally for my local breast cancer survivors community. Uh, it's not just for flatties, it's not just for lobular survivors, it's for breast cancer survivors in general. And it has to do with my passion for health and being a health educator myself.

I became a nutritionist about eight years ago. Just a couple of years after I was first suspected to have very early breast cancer and started getting extensive screening for breast cancer. And I thought nutrition was the way to address it. I thought that studying nutrition was the answer as many women do.

And now, after, about 10 years of studying nutrition, both formally and informally, I've also been studying all the other lifestyle factors, and I've determined that while nutrition is not something we can prove moves the needle, I do feel like it kept my cancer small. It is not something we can conclusively say or that I can conclusively say to any of my patients is going to solve their breast cancer problem or keep their breast cancer from coming back.

What I can say that science is telling us very clearly is that exercise can keep cancer from coming back. Not always, but it's a really good bet. And so what I've decided to do as a nutritionist, as a way to kind of quell my feelings of conflict over the overemphasis on nutrition in our community is to come out as a nutritionist in favor of exercise as someone who has never been an athlete, who has never been motivated to exercise and still am not on most days.

I would like to have a system in place locally where I can be held accountable to my goals to walking three days a week for an hour at a time, which is what science is telling us right now is the best thing to keep recurrence at bay and to fight off. The environment of inflammation that happens so often in our lives for various reasons.

And so I decided to start a pilot project here in Oregon, and I intentionally didn't go out to those groups that I'm already connected to, but really was seeking out strangers in our community so that I can get really unbiased feedback and input. To develop this program and make it bigger and make it reproducible for other communities.

So I'm calling it walk away from breast cancer. It's just a way to keep walking. It's a weekly check in on zoom and then getting together in person about quarterly to do a relay race in person as a team walking, not running. And it's really pointed at people who are not athletes who are not motivated to get to the gym or exercise regularly.

So it's really meant to be an accountability tool and the relays are just a way to have an end goal in sight that's common and shared and a way to celebrate together. So like I said, it's a pilot project. It's really small right now and intentionally so. And I'm hoping that by next breast cancer awareness month, this will be my main focus is spreading the word about this and maybe even reproducing it across other states or countries.

So stay tuned for news about that. I won't be talking about that a whole lot this year because it's going to be pretty small. Um, but I might talk about it. I might check in and give you an update now and then on the podcast.

The other thing I realized toward the end of this breast cancer month was that my, flat community, That has been a really huge part of forming my new identity as a breast cancer survivor. Here in Oregon has grown a lot. We get new Flatties joining, Oregon Flatties on Facebook every month and people are really interested in connecting.

It's a very close and very safe community. And what I've discovered is I've been one of the main people welcoming new folks, and there's been enough growth in my area that I feel like I'm ready to launch a little off sprout, little subgroup of flatties here, uh, in the rural part of the Willamette Valley that is west of I-5.

So I think we've pretty much decided to call ourselves, Willamette Valley. West Valley flatties, an offshoot of Oregon flatties, and we don't have a Facebook group yet or anything like that, but I think we're going to be getting together for happy hour, like, once a month and just getting to know each other.

There's quite a few new flatties in our area, so that's really exciting. Something to go forward into the new year with also that's face to face and not online, which is more valuable to me for sure. And I think to most people. So that's exciting. I might be sharing, if you follow me on Instagram or Facebook, I might be sharing our new logo there.

I have two new logos in my life. I've been working on the one for Walk Away from Breast Cancer, and now today I've been working on the one for West Valley Flatties as well. And, um, getting some taglines and stuff like that in place is always fun. It's part of the really fun part of being an entrepreneur and a creator is making those things that are going to be educating the public about what we're doing and why we're here.

The really sad, challenging part of this breast cancer month for me has been losing another friend to metastatic cancer. In this case, she didn't. die to metastatic breast cancer. Actually, she was a a pre vivor in the breast cancer community. I met her down in San Francisco last October for flat day. We walked across the Golden Gate Bridge together and hung out, in different settings there and just really connected with her.

She was just a very innocent light. Um, joyful soul. Her name was Susanna and I had planned to meet up with her this last week when I was in San Francisco last weekend and I was going to be doing a half marathon there and I'd been in touch with her by text and told her that I tried to check in with her when I flew in on Friday.

And just before I flew in, I texted her and I didn't hear back from her and I knew that she was really sick and in the hospital and that. She had had an occurrence of cancer, metastatic cancer. And, um, so I knew when she didn't text me back. She's an excellent communicator. And I knew that she probably had passed.

But I went ahead and finished my trip to San Francisco before I chose to look on Facebook and see if her feed said anything. I didn't, I don't have Facebook on my phone, so I couldn't have checked down in San Francisco anyway. But I did as soon as I got back checked in with a friend. It was on Facebook to ask her if she'd seen anything and she looked on her Facebook page right away and, and she had passed.

So this is friend or family member, number four, since last August that I've lost to metastatic cancer and That is just a reality of being and staying in this community long term. You're going to lose friends and fellow advocates along the way. And that's really hard. Sometimes it's triggering. It's been triggering, also to hear my, my other friend who has just been diagnosed with metastatic breast cancer, who is still living, but hearing her tell her story, at our local Portland walk.

The other day was really hard to cause it reminds me of my mom and her story. Um, so yeah, it's just, that's just a hard part. And it was especially hard to lose someone during breast cancer month this year. Um, and just apprehend that there will be further losses in the next year as well.

So something to counterbalance that, uh, really joyful piece of news this month personally was that my stepson Mason got engaged. He has, Been talking to his girlfriend for a while about marriage, and we knew it was somewhere on the horizon, but we didn't know if he would be able to do it anytime soon.

And so really proud of him that he made that step, and that this next year is going to be one of a lot of joy and celebration as a result. And I'm very, very excited about his girlfriend being a long term member of our extended family. So, that's just something that is. brought me up and buoyed me during the really challenging moments of the last month.

Another couple of things that have brought me up are my Achievements. I did a 10 K successfully in Vancouver, Washington, a couple of weekends ago with my friend Debby, who is also my walking partner and will probably be a leader in Walk Away from Breast Cancer with me. And then I met one of my closest, longest friends down in San Francisco and did a half marathon.

That was really challenging. Um, It's funny how much more challenging just doubling your distance can be. And probably I hadn't trained as intensively as I should have, but a half marathons just over 13 miles. And it was the most beautiful 13 miles I could have picked because we started from the ferry building in San Francisco and walked all the way across the golden gate bridge.

And then most of the way back, almost all the way back to the ferry building, which was a half marathon. And we did that with the Pinkathon. Fundraiser down in San Francisco for Breast Cancer Research Foundation, and my friend was six months pregnant So that was quite a feat for her as well. I'm not sure that I'll ever Attempt a half marathon again except for in relay form because I just don't know that it is good for my body to walk that much at one time without resting.

And in that setting, it's really hard to give yourself a rest because you're wanting to finish and those around you are wanting to finish. And so I'm glad I did it once. I don't know that I will aspire to do it again. I hope that I do many 10 Ks again because I feel like that is a healthy amount of walking to do without a significant break, at least for my body and my age.

But I'm glad that I tried it and that I did it, and I'm hoping to take a team next year to do that same walk or race in relay form so that we can still experience the beauty of that course. They don't even have to rope off any streets at all. It's very easy to do that walk. And so hopefully we'll do it again with Pinkathon next year if the dates line up and work for us as a team.

But that was a major accomplishment for me as a non athlete, as someone who does not tend to get energy from exercise. I have chronic fatigue syndrome and I, I generally get more tired after exercise. So I had to really be careful and train carefully for this and work up my stamina and work up my ability, to withstand that kind of distance and that kind of, Lack of rest in the midst of, of exercise like that.

So really proud of myself. I didn't get a medal for that one, but I did get a medal for the 10 K and I, I definitely treasure the medal that I got for the 10 K up in Vancouver. Uh, that one's called the girlfriend's run. And I really want to do that one again too, as a walk. Um, cause that was really fun and beautiful as well.

The other thing that happened for the first time this October was we celebrated the first ever Lobular Breast Cancer Awareness Day. Hopefully it will be recognized globally across many countries and states next year, but this year we kind of did it on the run and I think it was maybe five or six states that proclaimed it an official day and Oregon wasn't one of them, but that didn't matter.

We got together. outside of my oncology clinic in Northeast Portland with my oncologist, Dr. Stanton, and two other advocates in the lobular community, one who's been around for a while and one that's brand new. Joined me and we all talked together. The four of us, we tried to pass out literature, but we didn't get very much done in that department, but hopefully next year we'll get inside the cancer center and we'll have access to actual cancer patients, which would be a big change so that was a really fun day and I'm sure we'll do different things, different years.

There were lots of webinars, some of which got recorded. So keep an eye on the LBCA's website. Lobularbreastcancer. org to find the recordings there if you're curious.

And of course, my involvement with Stand Tall AFC was significant again this year. I was in charge of tabling and I got to help advocates across the country apply for tables at big walks and small walks. And then when they got granted tables, I taught them and mentored them through the process of talking to breast cancer survivors and patients about Going flat after mastectomy, the importance of the phrase aesthetic flat closure when talking to your surgeon and that ensuring that you don't get left with lots of extra skin just because you don't get an implant doesn't mean your surgeon won't leave you with lots of extra skin hanging out.

And that's why the term aesthetic flat closure exists. And so we're doing a lot more advocacy and having a lot more conversations with patients for the first time because of this new tabling. Initiative that we have, and I'm hoping that I can stick it out and do this again next year, at least here in the Northwest.

Maybe I'll cut back my role and not be quite as national in my focus, but hopefully I'll continue to do tabling myself and maybe mentor others to do it in the Northwest here. And my role in the Lobular Breast Cancer Alliance setting is still firmly in place as well.

We hope to plant two more local advocacy groups across the country. Right now we have one in South Carolina and one in the D. C. area. I expect there will be one in Michigan before too long and hopefully one here in the Northwest, but, um, I'm having lots of fun in that role as well and hope to continue there until next breast cancer awareness month.

So lots of work to do, but lots of work got done this, this month and I am thoroughly exhausted from it. But in a good way, and, I know that my mom is looking down on me and feeling proud of all the work that I'm doing. And hopefully Susanna is there with her and cheering me on as well. And, I have a little incentive for those of you who are fans of the podcast.

I've been collecting some gifts to give out. And, uh, because I have had very few ratings and reviews on the podcast players, I'm hoping that this month I can ask you to rate and review the podcast. If you're a fan, it is definitely binge worthy now. I think I have 17 or 18 episodes. And so if you've been able to hear more than a couple of them and you're a fan, Please go to your podcast player, whether it's Apple or Spotify or some other podcast player, and leave me a rating and review there.

And if you do so, you can screenshot that rating and review and email it to me at kathleenmoss@protonmail com. And tell me if you'd like to be on my email list while you're at it. But if you email me a screenshot, I will enter you into a drawing for some really cool and beautiful things. Um, I'm, I've got some bras, I've got some shawls and towels that are really beautifully woven.

And then I've got some breast cancer magazines from Wildfire. Breast cancer magazine and a book of poetry that's been donated. So I will ask you if you win, if you're drawn, and I'll have about 20 people that'll be drawn. I'll ask you if you would prefer something to read or something to wear. And based on that, I will send you a little gift in the mail.

If you're willing to send your address to me, which I will not use for other purposes or share with other organizations. And this is just kind of a thank you for being a part of this community for supporting me. And also a way for me to get some ratings and reviews and get some feedback from the folks that listen to me most.

So thanks in advance for doing that. Again, my email address is Kathleen Moss at protonmail. com. And you can send me that screenshot right away. I'll talk to you next week on Sunday. Bye bye.