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Transcript:
Hello friends and happy Spring. I do not have a guest today, and that might be shocking to some of you who've just started listening to this podcast because for the last five episodes I've had guests and that is really unusual. From the very beginning in season one, I always did one podcast episode with a guest and then followed it up with some commentary and reflection on what we talked about.
But for many reasons, this last month and a half has been different. And I've just done guest after guest after guest, uh, mostly because some of the guests had messages that were very time sensitive and I wanted to get their messages out. So, um. For example, Lori, who was the coach for the Dragon Boat team, uh, she wanted to tell her story because Dragon boat season has just begun, and I wanted folks to be able to learn about dragon boating in time to join them for the beginning of the season.
At least here in the northwest, the season starts after daylight savings changes. So, um, wanted to get that out. And then this last interview with Christine Handy was extremely time, time sensitive because she wanted to get all of the breast cancer survivors and flatties and. Their caregivers and loved ones into the theater on April 1st, uh, for her screening.
And at the moment that screening is sold out, she is trying to get a bigger theater. So if you've tried to get tickets recently and were turned away, you might try again in a week because they may secure a bigger theater within, uh, the man's Chinese theater. Kind of complex of theaters, so, uh, that's something you might keep trying if you really wanna join us there in person.
And I have to say that if you're watching on YouTube today, you'll notice that I look very tired, and that's been true for the weeks since I got back from Las Vegas. Those of you who have subscribed to my newsletter and followed me on Substack, uh, you will know that I had a trip to Las Vegas.
Usually lasts around five days around my husband's archery tournament there. It's a worldwide gathering of archers, huge tournament that we go to just about every year. And I think the number of anesthesias that I've been through at this point, combined with all the smoke and just general anxiety that is present for me in Las Vegas, especially when I'm staying on the strip, which we did this time, which just extremely tiring and.
Reminds me that I do have a small amount of chronic fatigue syndrome, that I do have to, uh, work to get past some of these barriers with fatigue and, and energy loss. So I'm still fighting my way out of that hole. But I'm here because I have so many things to talk to you about. Uh, first off, I want to tell everyone that I did get an ultrasound this last week and it came back clear.
So I'd been waiting , post-surgery to get my. Final ultrasound to make sure that there was not still a suspicious lymph node the way that they thought there was. In my last ultrasound, uh, I had a excisional biopsy surgery in January, so I guess it's just been two months. Anyway, I. So I had all the inflammation from surgery.
They couldn't go in into an ultrasound until that inflammation calmed down and I just had that ultrasound this last week and it came back clear indicating that it really was never a lymph node. Um, it was probably a complex cyst that ruptured sometime just before my surgery, and that's why there's no evidence of it in any of my, um, my excisional biopsy tissue.
So that's good news. I don't have to worry about having a recurrence, uh, which I was pretty sure was the case, but I just had this final step that I needed to wait for and see myself through, and very reassuringly. My radiologist did not even come into the room to talk to me this time, which never happens. That's the first time I've ever not had her come in the room to talk to me after an ultrasound. So that was very reassuring. Uh, so I just wanted to share that news off the bat.
And then I just wanted to go back and reflect on all of these lovely interviews that I've had over the last five weeks. Um, the first couple were, as I had told you, they would be, were with a couple of pretty good friends of mine, folks that I see every couple of weeks on average.
Um. Brenda is just a local super close buddy of mine that, um, has had a lot of struggles and we've grown close through her struggles. Um, and through our connection through the breast cancer journey, we both went through breast cancer right about the same time, and she had a much longer treatment plan than I did.
So she's just come out of her treatment not that long ago. And, um. Brenda is someone who, unlike a lot of folks that I. Tend to shine the spotlight on in my Instagram and other community posts, I find there are some people that are not celebrating their new body after breast cancer. You know, shockingly, of course.
No. I think the assumption is that we wouldn't be too happy with our bodies after breast cancer, but. Most of my friends are, and there are a few friends that are still coming out of the trauma of breast cancer, including Brenda, who are not so thrilled with their body. And I wanted to feature someone like that.
Um, and I wanted it to be someone I knew well, and that was true in Brenda's case. I know her well. She trusts me, I trust her, and I had her here in person in my home for that interview. And, uh, Brenda and I talked about the contrast of the two breast cancer events here locally that we both went to together, and I wanted to talk a little bit, reflect a little bit more on that and the contrast there.
So the first breast cancer walk that I ever went to was also Brenda's first one. It was in 2023 and it was at the zoo here in Portland, uh, Oregon, where near where I live. And Brenda was one person, maybe out of three or four people that I had found for that event online on Facebook, I think. And. Someone I hadn't met before that event.
And then there were at least a dozen women that I had met and gotten to know really well at the retreat that I'd gone to about six months prior. And so, but Brenda was a brand new friend that I'd been interacting with online. I hadn't met her in person. I. And she came into that event with a, a sense of exhilaration, seeing all of the energy that the dozen or so of us who were very celebratory of our bodies in that context, it kind of caught her, you know, like a virus that kind of caught on and she caught the, the energy from us.
And kind of jumped in with some, some hesitation and a little bit of timidness, but jumped into the, the party basically is what it was. It was a Susan G Komen walk, and Susan G Komen is bringing the party these days. Um, they're much less focused on walking than kind of. Jumping up and down, singing, dancing, being silly together in a lot of their events across the country.
Although, you know, in different chapters, they're a little different, uh, from one territory to the next. But here in the northwest, we tend to have a little party. When we go to Susan G Komen walks. And so Brenda jumped in with a lot of energy and we just kind of danced around a lot and had a, a friend of mine was actually up on the stage leading Zumba, and that was such a great memory.
There was probably 20. Or so of us Flatties who, um, had gathered in advance and knew that we were gonna be there. And, and I actually choreographed a little video. I was the technically the leader that time, and I did a little video that you can still find on my YouTube channel and on my Instagram. Uh, I, I brought little signs that people could hold saying positive things about their body that went along with a, a song called I Am Woman.
That's a pretty recent pop song. And so we did a little choreographed deal and video. That was really fun. But, um, then we had others that joined us who were flatties who could see us. 'cause there was such a big group of us and many of us with our shirts off and, um, some of the, the other flatties and the crowd just were attracted to that and joined us and, and we all walked together in the very short kind of span that Komen allowed for us to walk on that event.
It wasn't a 5K or anything, it was pretty short. Allowing for people with disabilities, which we really appreciated 'cause we had a number of those. So, um. In the end, we gathered together, did a little dance and celebrated with the song. And, uh, it was so much energy and there was even like a, a political figure there.
I think it was like a state representative that had spoken from the stage and some of us went and talked to her afterward. So it felt like a really significant event in my life. It was a very strong memory. Lots of photos taken there. And I share that with Brenda, who happens to be now the closest flattie to where I live.
She lives really close about five minutes away in a small college town near where I live. And uh, so we get together and reminisce about that. But the following year in 2024, Brenda and I got together at the same walk. All of our Flattie friends, the ones that are, that bring the energy, that bring the party, um, had gone to Bend for a flotilla event and were floating down the river that day.
And so I just had a bunch of new flatties that were just joining the community, one of which was Avena, who, um, I went to Burning Man with and shared that story. Earlier in the podcast, and I interviewed Avena earlier in the podcast. The, the day of our interview was the day that she invited me to go to Burning Man with her.
So Avena was there, Brenda was there, and a couple new flatties were there who also were pretty timid about their bodies. And I was tabling for the very first time at that event in 2024 at the zoo at Komen. And I felt that the energy was so different. People who had not been used to gathering with other flatties before, not certainly not used to taking their shirts off.
Brenda and I were the only ones that did that in this case, and only for a short time. I was pretty cold, but also because I was tabling, I didn't wanna scare people away by being shirtless who might wanna otherwise come up and talk to me. With my shirt on that says flat across it, which is a nice more welcoming kind of greeting, I guess to say.
Let, let's talk about being flat. And so I did talk to a lot of folks and it was much less of a party, but it was also very meaningful and productive and built a lot more bridges, I think in, in a different way, in a more conversational way, less of a kind of a spectacle making way. So I don't know, all that to say that Brenda and I have a, a very different memory between those two years and I have a different focus now.
I'm tabling now for Stand Tall AFC instead of just being there as a spectacle maker. And I feel really good about that role. I. And I'm looking for other flats out there if you're interested to train under me as someone to table at various walks across the us, especially with Komen and the American Cancer Society, 'cause we've kind of partnered with them in a way that makes it more likely that we can get tables with them.
So. There's a little call out for those of you who are interested in working with me. And then moving on to the next interview, which I had with, Danyel, who's a, a good friend here locally and is getting used to a metastatic diagnosis and also has a really powerful advocacy platform of her own locally, which is to take pictures of breast cancer survivors and other cancer survivors in her studio.
I wanted to talk about my relationship with Danyel, um, kind of in as an effect of my relationship with my mother who passed away of metastatic breast cancer. My relationship with Danyel has only grown stronger because of her metastatic diagnosis. I think because of that tender spot in my heart, uh, recovering from the loss of my mom.
I find myself, instead of being scared of, of being Danyel's friend, I'm actually drawn closer to her. And I think for most people, when you learn about someone who, who is dying, who you know, maybe as an acquaintance or as a lighter friendship, most of us will back away. Giving them space, giving ourselves space.
It's only natural to do that. But I'm really glad personally that I am not doing that with Danyel. She also lives very close to me, um, two towns over, but also in a town where I am starting to do a lot of my errands and my shopping now. So I'll check in with her when I'm in town, and I've always helped Danyel in the studio.
I've always been an eager volunteer to come and help her with other women that she's photographing. So I've played that role in, in her advocacy work, but it's been a scary season for Danyel. She has a scary diagnosis. Triple negative is not the kind of breast cancer that you want to enter into the metastatic phase with.
Um, it's, it's a, a hard time and she doesn't know whether any of these treatments are gonna work very well, and she's already exhausted One. As far as we know, she only has this one last treatment that she's on now. Um, that's, that's not even an option you know, there's always the possibility that her metastatic cancer would stop growing, which is another hopeful option that does happen for some folks. So we we're kind of watching and waiting with Danielle. She's still pretty functional. She's not too disabled by her treatment, but she does have mets to the brain, which has been really scary just in the last couple of months. And just right before my interview with her, she found out that she had a brain tumor.
So that, that has been scary 'cause it, it has affected her mobility a little bit. And so I will. Let folks know how Danyel's doing. Um, if you're interested in my Substack newsletter, which I'll talk about a little bit later in this podcast episode, but I wanted to talk about Danyel's advocacy work as a photographer and just how powerful that is and to encourage you wherever you are, whether you're a photographer or a breast cancer survivor, to do more of this work.
Um. Get into a photography studio if you haven't yet, because it is so empowering to have someone else take pictures of you and your new body and come away from that, and then look at the pictures and to see. How you feel about your new body, um, whether it's playful, whether it's bashful, whether it's powerful, forgiving of your body for changing or for needing the changes.
It's just a really transformative experience in, in my. Story and those of you who have the skills of being a photographer, um, even lightweight photography skills can be put to good use by entering this space as an advocate and taking pictures of other breast cancer survivors, um, at breast cancer walks or in a studio space or in a, just a private you maybe outdoor space.
That's beautiful. So just wanna encourage folks to experiment with that in your lives. It's been a huge. Huge influence in my own recovery, um, and my own sense of body positivity. And then my next two guests were Lori and Ellyn. Lori, uh, a really powerful leader in the Dragon Boat community. And Ellyn, a really powerful leader in the flat community at large.
Uh, someone who's on social media a lot and is well known for her book and her AI tool and her blog. Uh, I wanted to say about both of them actually. Similarly, their stories were both kind of similarly telling a tale of, um, wanting. The most powerful treatment possible, which is very unlike a lot of the gals that I interviewed in season one.
I, I just happened to interview a lot of women in season one who did not want a lot of treatment. For whatever reason, they were reticent to sign up for lots of chemo or radiation, and some of them are regretting the amount of chemo, radiation, or, uh, immunotherapy that they were offered and given and.
Some of the consequences of that. But in season two, here I am with a couple of gals that are just, they're telling their story and saying how desperately they wanted to be given the most powerful regime of chemo possible. And Lori, in Lori's case, this was like a dozen years ago or so, and, uh.
I just wanted, the one thing I wanted to say, coming away from her interview was that you can't really do that anymore. You can't go to your doctor and say, give me all the chemo, gimme everything, load it up, the most powerful chemo drugs that you have and, and have your doctor say, okay, unless.
That's what your oncotyping test prescribes for you. So nowadays we have this gift of having an oncotyping test, and it's pretty much practiced across the board. It's standard procedure now to give every breast cancer survivor after or even before. Their surgery, getting an onco typing test to say whether you need chemo or not.
And so Lori's story is a little bit outdated in that respect. I don't want to have her story carried forward in a way that is teaching a false truth out there in the breast cancer community in terms of what is practiced these days. Um, she was not given an oncotyping test 'cause they didn't exist yet in her story.
And so she was able to ask for a more potent package of chemo, and she compared her story to someone that was reticent and reluctant to have as strong of a package and that person did die. And, and that's unfortunate, but I don't want her story to be told in a way that is misunderstood here. So I wanna say that it is your doctor and your oncotyping test that need to inform whether you have chemo.
If you're a new patient just facing all of these, uh, possible scenarios, you don't need to worry that be because of Lori's story. She survived because she argued for stronger chemo or more chemo. That's not the way it works. That's never been the way it works. And now we know why is is because we can see some of these mutations and the way that the cancer cells are acting and working and the Oncotype test is the key to figuring that out, that formula of what you specifically need.
There will be more specific tests as we get further down the road in research. Um. And maybe this is a good time for me to talk about research. It's a heavy week for me. I have a heavy heart this week because just yesterday, breast cancer.org came out with a podcast. Updating us on what the federal government's situation and, and lack of funding for the NIH is going to look like for the breast cancer community.
And I consider breastcancer.org a very strong authority on this. So I'm taking them seriously when they say that probably by October of this year, there won't be a lot of research dollars left in the breast cancer research world. And that is extremely heartbreaking for me as a breast cancer advocate and as a research advocate.
And I don't take it lightly and I don't expect that it probably will change, but I think there is still some hope that the judiciary or the Department of Justice will step in and alter that. Um, I don't wanna talk about the wider world of politics here, um, but I do talk a little bit more about it in my new Substack newsletter.
And so if you're interested in following that part of my heart and my concern, uh, you'll hear more about it if you do follow my, my newsletter on Substack, either through your email. Or you can also follow me through their app the substack app and even get access to a little bit more of my political side there.
There's a little bit of a social media. Platform on Substack now that didn't exist before. And so you can make it what you need it to be. You can make it just a newsletter or you can make it into a kind of a, a Twitter like platform. And so I'm doing both. And the, the Twitter like platform, it's kind of a little bit like Instagram.
Like you can write more words and add more pictures. Um, I've never been into Twitter myself, but I, I see it as being similar to Instagram and I loved Instagram and still, still love it on certain days, but trying to distance myself from it a little bit now. Anyway, you can find that on the Substack app and, uh, follow me there in a more daily way.
My work as a, a lobbyist for the National Breast Cancer Coalition has been around getting more support for breast cancer research.
And the Department of Defense in particular, and also getting more support from elected representatives around Medicaid and making Medicaid available sooner to people like Danyel who are ultimately dying of metastatic breast cancer and should be well, are eligible technically by the letter of the law for Medicaid, but they have to wait a mandatory waiting period of up to two years for.
The Social Security Disability and Medicaid benefits. And so I've been really active lobbying for that, um, those changes to happen. And so it's, it's no surprise that I would be disappointed, of course, with this change in NIH and National Institutes of Health funding. That's, that's just happened in the last month or so.
So kind of shocking, kind of disorienting, kind of heartbreaking. Very important to keep talking about in my opinion. And so let's keep talking about that. If you get onto the Substack app, you can actually chat with me directly in messages and in the chat. So, um, you can find me there at abreastcancerdiary.substack.com. There's no at sign in the beginning. It's just abreastcancerdiary.substack.com. That leads you to my main SUBSTACK webpage, and then if you get onto the app, you can follow me there too.
And then finally, my last guest, Christine Handy, is a friend of mine and I had read her biographical story, her autobiography, uh, called Walk Beside Me a couple of years ago when I first met her, and was really just delighted to hear that.
There has been a movie made, not just about that story, but about her continued story after that story ended and her "going flat" part of her story. Um, she's been a huge flat advocate and I really encourage you to listen to that interview if you haven't yet. Um, she's just such a champion for body positivity in a way that I really relate to.
I think mainly what she wants now is to change Hollywood and make our breast cancer stories a little bit more honest in the way that they're portrayed in film, and that's kind of her passion at the moment.
So that's kind of my reflection on the last few episodes. I wanna talk a little bit more about Substack and how I've kind of restructured my communications scheme. Personally, I used to be all about, well, way back, I was all about Facebook and Instagram both, and um. Had started some groups on Facebook, mostly for DCIS and Lobular, but I've really backed off of Facebook and I've taken it off my phone.
I don't really interact that much there anymore except for in my work with Stand Tall. Sometimes I get sucked back into it and I'll comment or like something here and there, but I really try to stay off of it and I only go on my laptop, so I'm trying to work up the courage to take Instagram off my phone the way that I did Facebook a couple of years ago, and the way that I'm weaning myself from Instagram is that I have become very active on Substack. I learned from one of my favorite podcasters who is not in the breast cancer community, that Substack can be used as a newsletter platform. I had no idea. I thought it was only for authors and mostly authors of fiction. And so I didn't think it was a platform for me until about a month ago, and I learned very quickly and. immersed myself in all kinds of tutorials to figure out how to interact with my audience now, both my YouTube audience and my podcast audience on Substack instead of MailChimp, and I am loving it.
It is so much more of an authentic. quality, community. I feel that most MailChimp newsletters are cheap and sleazy and just so icky. I just don't wanna emulate them. And so I've been really hesitant to put out newsletters very often, but because Substack is a quality platform that has quality content and no garbagey ads or strange algorithms. So I've been so, so disappointed with Instagram. Not to mention all the political stuff now lately, but I, I don't talk about this very often, but I'm a nutritionist, I'm a functional nutritionist, and functional medicine practitioners have been highly censored in every social media platform.
And so I have heard that because of the lack of censoring, the whole censoring umbrella, being removed from. Facebook and Instagram that it has been a friendlier place for fellow functional medicine practitioners like myself, but it's not worth it for me to go back there. It's just not, it's not happening.
I'm still on YouTube now and then not as often. Um, but I love Substack because it's a quality clean. Pure experience where you're just getting what you're asking for. There's no ads, there's no, you don't have to pay to be on it. Um, there is the option to pay the people that you're subscribing to, to offer you the content that they're offering you.
And my A Breast Cancer Diary Substack newsletter will always be free to everyone, and you can always just. You know, pay if you'd like to. I do have a couple of other substacks that may become paid platforms. One is very new and I started it just because I was giving a talk to a local breast cancer organization about nutrition.
And I decided recently that I was going to use Substack instead of YouTube for my nutrition content now. I have about a hundred videos on my nutrition channel on YouTube. It's never gotten very much traction there because of that censoring issue. Uh, because basically 'cause Big Pharma has a vested interest in, places that are doing the censoring.
Um, and big Pharma does not like functional medicine because we. Tend to heal people without drugs and, uh, there's, there's no mystery about that. So instead of trying to resubmit all of my a hundred videos of about functional nutrition onto YouTube and put up with their ugly ads that I don't love, I've decided to take them down off of YouTube and resubmit them into substack on a new platform that is a paid platform.
And so in the future, when I have paying clients that work with me one-on-one over a number of months, I will give them free subscriptions to that platform to look at all of my old videos. And for folks that can't afford to see me one-on-one, they can pay for a month or two or a year at a discounted rate on Substack and get access to all my videos and not have to watch YouTube's ugly ads.
Which gives me some solace. 'cause I don't like offering healthcare tips and advice in the environment where there are ads being offered in the middle of my video that I completely disagree with and do not support because they're not healthy things that are being sold. So I feel really good about this restructuring of my, my first YouTube channel, which used to be called Seeking Deeper Health.
It's no longer called that. I'm rebranding it and I probably will still use it I don't know exactly how I'm gonna use it, but the one video that went pretty crazy there was about spas and essential oils, so creating a spa-like environment in your home. And that was definitely not the focus of that channel.
And um, so I might still do something about spas. I'm a big spa fan. I like to do reviews of spas. I've done that some on Instagram. So I might do a spa reviewing channel in the future. Using that platform. I still have my Estrogen Diaries YouTube channel, which is how most of you have found me. I think because that's been my most successful social media platform by far.
Um, I still have people finding that channel all the time, even though I'm not posting videos very often. I'm gonna be putting much more energy into substack, including my writing, which is a new, a whole new offering for me.
I have not shared my writing much. Um. I've been working on a couple of memoirs and a collection of essays for a couple of years. It's been a really fruitful time in my life as a writer since my breast cancer diagnosis, and I've known that I would share that writing somehow, somewhere, and I figured that I would probably self-publish a book or two or three.
And I've shared my writing in Wildfire Magazine a little bit with essays, but Substack is a platform that was created for sharing, writing, and um, long form writing. And so I'm thinking about serializing some of my writing on Substack, and if I do that, I think it will be under a breast cancer diary. My, my substack newsletter there that is the same name as this podcast.
So it'll be easy for you to find. Uh, the other couple of substack accounts that I have is one for my local flat group, which is called West West Valley Flatties. And it's just for us locals that get together in person. So it would not be of interest to you, but you might see it.
When you see me on Substack. You might see that I have that other Substack uh, account, and that's what that is. It's just for locals only. And then my paid substack. Nutrition, offering is, uh, it's called cleanup after breast cancer, if you're interested in that. And it's basically just the price of one, one-on-one session with me as an intake, like a 90 minute session with me.
You can get a whole year of content there and I'll be uploading my videos and I will be breasted in those videos because a lot of them were made before I had my mastectomies. And then I'll be making new videos to add to that as well. And then I'll have some challenges. If people want challenges, if they want accountability, and to be challenged around health, uh, nutrition and exercise especially.
Oh, and then I do have, I have another substack. I've gone crazy on the Substack and I created one for my new pilot project, which may turn into a nonprofit organization called Walk Away From Breast Cancer. So that is just about walking, it's just about forming teams and accountability groups around walking.
So very simple mission in, in that one, but that one is open to people. All over the world. I am encouraging folks to take my model and replicate it in their own communities, and I am nearly at 40 minutes. So I'm gonna try to wrap up here really quick. Um, I wanted to make a couple of announcements for the first time.
I've been being interviewed on other people's podcasts and YouTube channels, so wanted to share my first couple of interviews with you. One is out now and one will be out in the next couple of days. Uh, the podcast interview that I did feel really good about it. It's a good representation of my story and it's with a gal that I know pretty well and I trust pretty well, and I love her podcast.
It's called Breast Cancer Conversations. So if you look for that in your podcast players, uh, you'll find me there in her latest interview. Uh, Laura Carfang is the gal that interviews me. And then the one that's coming out on YouTube in the next couple of days is, uh, a very large YouTube channel called The Patient Story, and their mission is just to get more information out about cancer and different cancer patients.
Very differing stories. Like everyone has a little bit different of a story and so they wanna tell as many of those stories as they can, and they have a website and they put out at least one video per day, every day, all year long on YouTube. So it's pretty big channel. They didn't want me to share my last name for some reason, so you can't search by last name, so you'll just have to watch for it as I do over the next couple of weeks and maybe subscribe to that channel if you're interested in hearing more cancer stories.
And that will be, um, kind of short. I think it'll be like a half hour long interview. I don't know how they're gonna edit it, but it'll have a lot of pictures of me and my family and my life, which is new for me to share that kind of personal stuff online. So, um, and then I have a new video coming out on Estrogen Diaries about my new prosthetic.
I've been wearing it a little bit more and I have some tips and tricks around, working the best ways to work with a custom prosthetic. So in my case, I have a prosthetic that was, a scan of my body that created the prosthetic. So it matches my, it's meant to make my left side match my right side, basically so again, if you wanna follow my Substack newsletter, if you wanna get it in your email inbox once a week, you can go and subscribe at abreastcancerdiary.substack.com.
And if you don't want it in your email inbox, but you wanna follow it on the app, you can go to the app, download their app, and then just look for a breast cancer diary under the Substack app.
And you can join me there in the chat and in what they call notes, which is kind of like the Twitter, Instagram option, and on my weekly email blast, which comes out on the app as well. I will not be having a guest next week either. I will be talking about my advocacy journey because I've had a couple of people asking me about this recently, and I realized that my YouTube video on it was not taking off and getting the exposure that it needs.
So I'm gonna do it on the podcast instead. Just me talking about how I became an advocate and how you too can become a breast cancer advocate and the different ways of being one. So stay tuned for that next week, and I will talk to you then.