Rachel Ford

Terry Arnold and Rachel Ford discuss Rachel being diagnosed at age 37 with inflammatory breast cancer, and not getting the standard of care treatment.

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Rachel Ford Podcast

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Terry Arnold: Hi, I'm Terry Arnold with the Ibc network. And you're listening to us on talk. Ibc podcast and there's my dog. Rachel said. She's got one walking around, too, and I've got Rachel Ford with me today, and we're going to be talking about her experience with inflammatory breast cancer. So, Rachel, where do you want to start? 

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Rachel: We can start, I guess, at the beginning. I was. 

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Terry Arnold: Okay. 

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Rachel: 37 years old. When I woke up one morning and my breast had suddenly changed. 

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Rachel: It had turned red, it had gotten swollen. It was itchy 

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Rachel: My skin had changed so instinctively I felt, you know, I went and did a self exam in the shower. I felt my breasts, and I was like, I don't feel anything I was like. Maybe it's just a bug bite or something. 

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Rachel: and then it kept itching and kept getting worse throughout the day, and so I laid down in bed that night, and I did another self exam. And that's when I found that I had a 7 cm tumor in the top, and then a 2 cm tumor in the bottom. And at the time I didn't know it. But those were not actually my inflammatory breast cancer. Those were invasive ductal carcinoma and invasive ductal carcinoma in situ. So 

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Rachel: from there. And this ironically happened a couple of days before Halloween. So you know, everything's breast cancer all month long. And then at the end of it, I'm like, Wow, do I have breast cancer? So I went. 

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Terry Arnold: To stop you for half a second. You know you did what I did. I woke up one morning, and it was just completely different. I was what I called a small, a small c cup, normally not a full c cup, and I couldn't get my breast into the bra. It was that small? Now you say you found all these tumors? You didn't know they were that big 

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00:01:50.400 --> 00:01:54.149Terry Arnold: from your self. Exam. I guess that's something you found out as you. 

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Rachel: That was something that I found out from my pathology. 

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Terry Arnold: I'll leave it off. 

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Terry Arnold: So you wake up. It's different. 

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Terry Arnold: and you realize it's feeling worse all throughout the day. And you're starting to get this like 

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Terry Arnold: warning bell. Maybe this is cancer. 

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Rachel: Yeah. 

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Terry Arnold: What happened next in the diagnostic process. 

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Rachel: So I went to my midwife actually the next day, because I had both of my children at a midwife. I was very natural, and this woman knows my body better than everybody in the world. Pretty much. I I birthed 2 babies, and and she knows me still. To this day I could walk into her office, and she knows me. 

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Terry Arnold: A lot of people don't realize midwives give women wellness care outside of pregnancy. I mean, absolutely 

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Terry Arnold: they do everything. 

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Rachel: My gynecologist, too. So I went in. I was like, you know, I really don't know what's going on here. This is making me nervous, and you know she had given me my exam back in Jan in July, and this was October. 

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Rachel: so it had only been a couple of months, and at the time I was like, Hey, when am I supposed to get my 1st mammogram? Because I was 37 years old, and I was like, maybe it's soon. I really had no idea about any of this stuff before. And so she looked at my breast and she examined it. And she's like, you know, I don't like this. 

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Rachel: She's like I 

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Rachel: am concerned. She's like I. It could be an infection. But I want you to get over to the rows 

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Rachel: immediately, because I know that they're you know they're great with their mammograms and everything, and at the time I didn't. 

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Terry Arnold: I'm gonna interrupt again. Since you and I are both. Basically, you know, Houston area people, the rose is a very well respected mammogram center in Houston. They have 2 locations. They offer affordable 

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Terry Arnold: mammograms, and they also know Ibc pretty well. So that'd be kind of interesting to see if that figured in with you. So you got to get the mammogram 

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Terry Arnold: right, and I just in midwest. 

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Rachel: So I actually did not pay out of pocket, even for this mammogram. It was covered by 

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Rachel: somebody else's mammogram that did pay, actually, because that's how they do it. So I didn't pay out of pocket. But I went in, you know, for my 1st mammogram. 

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Rachel: and you could tell you could see it written all over the girl's face. And she was like, I need to show this to my my radiologist. And I was like, Okay, you know, and and I'm starting to freak out, you know. And they were like, well, we need to do an ultrasound, and I was like an ultrasound I was like, I'm not pregnant, and they were like, no, it's it's to check your your breast. And I was like, Oh, well, that I didn't even know they did ultrasounds on breast. So then they took me in there. 

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Rachel: and you could see it on her face, and she was the radiologist came in and did it herself, and she was like, Oh, goodness! She's like, I need you to come back in here for a biopsy. And mind you, this is 

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Rachel: Covid. So even getting into the appointment was a struggle. They were like, we don't have any appointments for like 3 months, and I just told the woman I was like. I don't know how to say this to you, ma'am, but I will come at any time of day. I don't care where which location. My breast looks like it's going to fall off, and I don't know what to do, and she's like, hang on. 

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Terry Arnold: I was like that within within days. I thought it was gonna auto amputate. It was just. 

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Rachel: Oh, I know it's so scary. 

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Rachel: and and so I told her I was like, I will come anytime, she said. Just hang on a minute, and they got me an appointment. It was 

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Rachel: 2 days later. 

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Rachel: and that's when I had my mammogram and the ultrasound, and she was like I have to get you back in here for a biopsy. She's like the soonest I have is like 6 days out. And I was like, Okay. 

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Rachel: I was like. I know that this is cancer. Now, of course. And I asked her, I was like, Do you think this is cancer? And she's like, Well, I can't tell you that it's cancer without doing the biopsy, because that wouldn't be medically correct of me. But she was like, it really looks like you have cancer. 

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Rachel: And so I left there that day, just, you know, floored, of course. Cause I already knew. I mean I I googled it, and I was like, Oh, no, this doesn't look good. 

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00:06:03.390 --> 00:06:12.220Rachel: And so I went in 3 days later, actually because she understood the severity of the situation.

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Rachel: And she got me in as soon as she could, and they called me back. They were like, actually, Can you come in now? And I was like, absolutely. Let's get this done and over with. 

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Rachel: and her staff, because I couldn't have anybody with me again, because we're covid time. I had to go by myself and her staff and her held my hand 

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Rachel: while I went through my biopsy process and cried, I mean cause. 

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Terry Arnold: Obviously painful. 

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Rachel: I felt like my inner pain of the situation was far worse than any outer pain that I felt. They numb me up pretty good. 

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Terry Arnold: I'm asking is that sometimes biopsies are painful for people with inflammatory because the breast gets harder, and they say it makes the numbing medication not as effective. So I was just kind of curious.

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Rachel: So the one on my breast did not hurt that bad at the time, but the one in my axillaries, the one the 2 that they did on my axillaries. Those really really hurt really bad, and I had already had, like a pretty good infiltration of Ibc in my lymph nodes. So it. 

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Terry Arnold: So it was. 

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Rachel: It. Was it so? What happened next? How fast did it take for them to get you the results? 

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Rachel: So 3 days later I had the results.

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Terry Arnold: Now, this is where your story gets complicated. Don't you think. 

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Rachel: Yes, yeah. So they called me in because I couldn't do it over the phone. And I was like, Gosh, I gotta go somewhere else with this Covid going on. I was like fine, whatever you know. Obviously, I know what you're gonna tell me. And so I came in, and it was just I think she's a social worker. 

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Rachel: And I think she just didn't know enough, because we went through this whole process, and they showed me my pathology, and I feel like 

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Rachel: at that time you kind of like zone out a little bit because you're being told that you have cancer. And I was 37. I was like what this isn't real life, 

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Rachel: And so she told me that I had invasive ductal carcinoma, because that was the big tumor. That was the 7 cm one. And I was like, okay, and they were like, and it's, you know, da, da, this great. And you know, they went through all this stuff, and it's her 2 positive. And I'm like, none of this means anything to me like I I don't know what you're saying to me. You're speaking a foreign language. 

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Rachel: but I was like, so I looked at her, and 

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Rachel: the the look that I got back was 

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Rachel: classic. I was like, so you mean, I don't have the bad kind. And they just looked at me like I had 3 heads because I had read on the Internet about inflammatory breast cancer. And 

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Rachel: I was certain that's what I had. 

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Terry Arnold: Hmm. 

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Rachel: Just by googling the symptoms that were going on with me. And they're telling me that. Yes, you do have cancer. And I was like. So wait. I don't have inflammatory, and I didn't say inflammatory breast cancer. Maybe I should have. 

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Rachel: And she was like they just looked at me, and they were like. I think that you need to go see your oncologist. And so then I was, you know, encouraged. 

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Terry Arnold: Got one of those all the time, you know. 

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Terry Arnold: Okay, have one. 

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Rachel: So they were like, well, we're gonna 

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Rachel: talk you through the process. Because at the time, remember, I didn't have insurance. And so I had to get insurance, and they had breast and cervical medicaid here in Texas, and I was. I was self employed, I mean, I was making pretty good money, but it was. I was just under the threshold with all my bills and my kids that I was okay to be on it. Because it has a higher. 

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Terry Arnold: To back up on that real quick, because this is something. I want people to know that in maybe different States do different things. But Texas does have a breast and ovarian 

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Terry Arnold: program for women under 40 that you can get your care. And that's something very. 

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Rachel: It has a higher income threshold than what any typical Medicaid would have. 

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Rachel: Right? And so it's something that 

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Rachel: it's like 2 times the amount. 

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Terry Arnold: Yeah, so that's something. For because I hear women say, Well, I don't have insurance and say, Don't let that stop you from going and asking questions because there are programs. I'm sure there's programs in other States. But you and I live in Texas. So we're talking about Texas right now. Okay. So you got your oncologist, what happened next. 

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Rachel: So well, she set it up, and at the time she was like, Well, don't try to go to Md. Anderson, because you're not going to have enough time. They're they're just going to backlog you. And now that I'm at Md. Anderson, I know that's not the truth. They would have had me in immediately and in the Ibc registry and everything, and I didn't know that at the time I didn't even know anything. I didn't know that there were different types of breast cancer that it was reliant on 

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Rachel: hormones for some people and not for others. You know I knew nothing. I was just like, Oh, my gosh, I have cancer at 37. 

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Rachel: So I go to my oncologist. And this was at Texas oncology, and I'm not going to name the oncologist. But we go through all the paperwork, and she's like, Oh, no, you you do have inflammatory breast cancer. She's also, she said. You also have invasive ductal carcinoma. And at the time they didn't know about the in situ, because they didn't take a biopsy from there. So they didn't know, is a different kind until surgery, you know. 

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Rachel: the next year in April. 

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Rachel: So she's like, you know, you're my second Ibc patient. And I asked her. I was like, Am I gonna die? 

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Rachel: And she was like, no, I'm not gonna let you die. And I was like, Well, I have 2 kids like I can't. I can't die like I need you to be honest with me. And she's like we're gonna do this. And we're gonna do that. And she went over my whole treatment plan. 

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Rachel: and that was 

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Rachel: November 24, th so I found it initially. It was October 26, th so we're less than a month away. I'm seeing an oncologist thankfully, because the next week was June. As you know, all scans it was. Let's check every part of you, and she's like, Wow, you're really healthy. You're 

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Rachel: no pre-existing conditions whatsoever, you know she's like, let's get you you into surgery. Let's get your port placed and let's get you on chemotherapy immediately, and so by December 7th I had a port, and December 8th I started tchp chemotherapy. 

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Rachel: and I did 6 rounds of that. 

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Terry Arnold: You know, I want to interrupt about one more thing. I, too, was diagnosed in Houston area. I was missed. I asked for 4 months, and then, when I finally got diagnosed, my doctor also discouraged me from going to Md. Anderson, she put it I don't share, and if you go there, I won't see you again, which is just awful. And I always tell people it's very difficult when you finally find someone who knows what you've got, and they're working with you to discourage you from going to a major center. 

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Terry Arnold: And that's a tough place, and I can tell you the big major centers will tell you not to delay local treatment to get to them for second opinion. But I wish people weren't put in that situation, because I think we can go to those major centers we can get. We can help their research with what we can offer with our biopsies and blood samples, things like that. And then we can also go back into our local place and get good quality care. And that's the best of both worlds. We're helping research. And we're helping bring education to the community. 

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Terry Arnold: But I find that lot sometimes community doctors say you're just going to be a rat in the wheel, and it takes too long. But just so I can say this that the big centers like Md. Anderson, data-farber. 

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Terry Arnold: Ohio, whatever they all have policies to bring in newly diagnosed patients in within 10 days. 

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Terry Arnold: and when you feel like you're you're building on fire. 10 days might take a long time. But honestly, it's not. And so I just kind of want to say that because I hear. 

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Rachel: They would have actually had me in sooner, and I. 

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Terry Arnold: Listen to your time. 

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Rachel: Had me in sooner, and you know I could have had a second opinion and started treatment too. I feel like people don't feel like they could go get that second opinion after they've already started treatment. But it might have made a big difference for me. 

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Terry Arnold: Tell women. If you're gonna get your kitchen remodeled, you're going to talk to more than one contractor, you know you will, and I think we don't need to be feel like we're doing anything wrong 

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Terry Arnold: to ask for specialists. Now, I will say when they're asking for specialists, it can be difficult, and we're going to get to this with you when you've got the 1st doctor telling you this, and you come along to the specialist, and they're telling you this, and mommy and daddy are just agreeing 

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Terry Arnold: you're like a little kid in the middle, and they're fighting, and that's a bad feeling. And you got to that. But the thing is, what are you gonna do when a specialist says. 

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Terry Arnold: Hey, there's more. 

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Rachel: Right. 

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Terry Arnold: So let's talk about what happened next. 

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Rachel: So I did tchp chemotherapy. I did 

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Rachel: 6 rounds of that, and then I had a left radical mastectomy with all of my non skin, sparing non nipple, sparing all of my lymph nodes removed, and then straight into CAD Sila 

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Rachel: and radiation. I did 6 weeks of radiation daily with a bolus 

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Terry Arnold: Through this with the chemotherapy. You didn't get the standard of care, though. 

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Rachel: No, no, and I I wouldn't know that until 2 years later, basically,

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Terry Arnold: So you had abbreviated chemotherapy.

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Rachel: Right.

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Terry Arnold: When you went into surgery. Had you shown a good response to the chemotherapy.

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Rachel: No, no, I I was triple positive. And so I was over expressing a lot because I my er positivity. My estrogen receptor positivity was a hundred percent. My progesterone was 20%, which is also quite high, especially for Progesterone. And then

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Rachel: I'm her 2 positive also. And for the first.st Oh, get this! For the 1st week of like! The 1st time that I had chemotherapy, I was still taking Birth control because nobody told me not to.

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Rachel: They knew I was on it.

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Terry Arnold: So.

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Rachel: And nobody told me not to take it.

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Terry Arnold: So you're going into surgery with a nasty looking breast.

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Rachel: Oh, yeah.

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Terry Arnold: How did you feel about that? Was there any alarm bell in your mind that.

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Rachel: Absolutely. I was totally nervous about it, and I asked about it. Several times I asked my oncologist. I asked my my breast

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Rachel: cancer surgeon, and she was like, Oh, no, we're going to get it all. It'll be just fine. And it wasn't until after I had surgery, actually. And you have a lot of time on your hands when you're trying to recover from a mastectomy to learn. So then that's actually, when I found Ibc network. I hadn't found Ibc network before that, because this was remember, it was

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Rachel: Covid. And so everything was shut down, even though most online, you know, support was out there it was still really hard to find, and there was nobody to say, Hey, I think you should be in this program, or Hey, you should look into this

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Rachel: so the the.

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Terry Arnold: 1st thing

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Terry Arnold: for myself, the very 1st thing I was told I got diagnosed to stay off the Internet. But what they didn't realize was, the Internet saved my life. I was misdiagnosed for 4 months, and I finally saw a passing mention like you, said the Bad One. And then I thought, okay, now I know what I need to be talking about. And then, even after that, I was told, stay off the Internet, and I must admit as much as I don't like that advice. I kind of get it. There's a lot of bad

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Terry Arnold: advice out there, so I'm glad that you found the ABC network because we're giving out good information. We don't give out medical advice, but we're giving out good information to help network you with the right tools to to do a good job for yourself.

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Rachel: Yeah, because everybody that I asked before was like, Oh, no, it's no big deal. Oh, no, it's no big deal. And then I go in the inflammatory breast cancer foundations, Forum, and all the women are like, Oh, my gosh, no, they didn't give you surgery right? And I'm like they did, and they were like, Oh, my gosh! I'm so sorry they should not have.

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Terry Arnold: Well, so they're talking from their experience because they know what the standard care. And there's algorithms out now that our website. So okay, so you had surgery inappropriately, did they?

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Rachel: Yeah, I still, I still had 6 lymph nodes that had cancer in them.

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Rachel: I mean.

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Terry Arnold: Radiation, score.

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Rachel: And it had infiltrated pretty. It had infiltrated pretty well into my lymph nodes, and so the other ones had a pretty good response to it, but 6 of them still had a lot of cancer in it, and this big lump up here the 7 cm one, did not respond very well, the the smaller one didn't respond very well, and my skin didn't respond pretty much at all. Like.

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Terry Arnold: No.

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Terry Arnold: okay. So I'm gonna jump ahead a little bit. What is your status right now? Are you somebody still in treatment? Are you? Are you, Ned?

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Rachel: I am on hormone therapy, and Ned for 3 years, as of March 8.th

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Terry Arnold: So that's a good thing.

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Rachel: It's a very.

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Terry Arnold: It had to be very scary to find out, and you and I were talking before we got started about a paper that was recently released in February. And I'll put that in the link. When we put the podcast up where a doctor who I know Audrey Teos, did a survey of not quite 7,000 women who were known. Ibc, all labeled Ibc, all stage 3, Ibc. And out of those women only 25% of them got appropriate care. Now this is very important. We say it.

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Terry Arnold: It wasn't about lack of insurance or access to insurance. These are women in treatment in places that think they know what they're doing, and only 25% got the standard of care. And people, just it blows their mind. This is happening. But what they don't know. Inflammatory breast cancer is not taught in medical school, not taught in nursing school. It's not presented on the main stage at the major breast cancer conferences because rare diseases are not.

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Terry Arnold: So we're working on that.

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Rachel: They're not.

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Terry Arnold: So, if you.

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Rachel: It's more attention than inflammatory breast cancer.

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Terry Arnold: Right. And so now you're part of that 75% that didn't get the right care. That's gotta be in what I call an oh shit moment if there ever was.

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Rachel: And and not even in that study, either, because that study only went to 2018. And I'm 2020. So that means it's still happening. And I do represent that 75% that didn't get all the care that they should have and could have.

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Terry Arnold: Now, so obviously, you are a big believer in second opinions.

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Rachel: Oh, yeah.

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Terry Arnold: And getting connected with somebody like the Ibc network, where you can get good quality information.

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Rachel: Yes.

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Terry Arnold: What do you want people to know?

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Terry Arnold: Kind of like, I don't wanna say take away because I'm not done chatting with you, but you know you. You hear this, you hear that.

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Terry Arnold: and all your friends like my friends. I was older, so my friends like, oh, you're so lucky! You're getting a free boob job and a tummy tuck. Well, 1st of all, I had great breasts. They were a little, but they were fine, and I was not overweight, and I didn’t need a tummy tuck, and I don't view breast cancer as a boob job.

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Terry Arnold: You know. What was it like for you at 39 years old, I mean 37 years old. When your friends were told you had cancer.

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Rachel: Literally, everybody was like, you're the one that got cancer because I was the vegetarian and the yogi, and they were like, you're the one who got cancer. And I was like, yep.

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Rachel: I'm the one that got cancer, you know. I definitely think I had a lot to do with stress, but I like I don't think I mentioned it before, but at the time of my diagnosis I was also going through splitting up my business of 15 years getting a divorce and moving simultaneously. So it was just a hectic time.

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Rachel: I think nobody knew how to handle it. I don't think that they really knew what to say. There are a couple of people for sure, that were a hundred like they're all the time like my cousin Candace was there every step of the way, I mean. She flew in from Detroit when I had surgery.

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Rachel: My mom was there all the time. I think she she watched my kids

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Rachel: all the times that I went to treatment because I didn't. You know, nobody could go with me anyways but

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Terry Arnold: Indeed! Help.

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Rachel: They had. I still had kids.

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Terry Arnold: About the

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Terry Arnold: you know. I hear all the time. Get your posse together, get your tribe together, and they act like we're just all sitting on a pillow with 800 million people around us that can take care of us, and

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Terry Arnold: was very fortunate in the fact that I had some terrific friends. I don't have a lot of family.

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Terry Arnold: and I have created a big family, but I don't have a lot of people, and

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Terry Arnold: my friends were amazing, but even they felt a little limited. What to say to me or do. What would you want to say to somebody who's got a friend who's young, newly diagnosed, or something big. What would you want to tell them? Here's what I'd like you to do? Here's what I'd like you to know.

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Rachel: If they had inflammatory breast cancer I would have them.

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Terry Arnold: It's just …

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Rachel: To to the Ibc network. But if they had, you know anything going on reach out to people who know what's going on with you and who are gonna understand it and get it like, because that community

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Rachel: is is so different, like my friends and my family were there for me, I, I 100% like as much as they could be. But I didn't feel

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Rachel: connected

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enough until I found people who really understood what I was going through like me personally, like they also went through those things even. And it sounds weird. But even in the breast cancer community I didn't feel, and I still sometimes feel this way that I didn't fit in as much as

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Rachel: is, I should, because

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Rachel: they're like, you know, they're it's different. Inflammatory breast cancer is different, and the treatment that you have to go through is different. And the staging is different. And so it's different. And so finding my community that that understood me was

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Rachel: really important.

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Terry Arnold: That's something that we really try to create. And I because I felt the same way, because I had so many friends, say, Oh, nobody loses their breast anymore. You know, this is barbaric. It's just a lump, and you know, and you just move on. And it's not, but also too.

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Rachel: You can treat it now.

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Terry Arnold: Say things to me, and I had, like, I said, wonderful friends who really did take care of me. But sometimes they would say, I'll do anything for you, and I felt like as they were running out of the room. They were almost afraid I'd say, to do something.

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Terry Arnold: I wish I thought to make a quick list

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Terry Arnold: of. Here's some things I could use help with.

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Rachel: But I was. I didn't want to ask anybody.

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Terry Arnold: You know I didn't know what I was getting into.

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Rachel: I've told people a few times now, just going through this myself. You know you have a birth, Doula. It's almost like we need a cancer doula, which is somebody that we can just talk to and like, tell them literally everything. And they've been through it before. So they get it like. They know what you need and what you don't need, because they they know that your fingernails are gonna fall off so they know that you need somebody to clean your toilet, you know.

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Rachel: we need somebody like that to kind of be the buffer, you know, that helps with those things and helps you navigate resources, because that's a tough journey in itself, too, and but also to be that person that like can be that buffer in between other people's emotions and your emotions about it, because it's the weirdest thing to like, go to somebody and be like, I have cancer. And they're the ones that fall completely apart. And you're like, no, wait, I have cancer, not you.

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Terry Arnold: Been through that where?

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Terry Arnold: oh, it tells me I had cancer, and they suddenly start talking about their Uncle Leon, and how much he suffered, and and how painfully, slowly, he died. I'm like.

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Rachel: She died.

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Terry Arnold: Comforting me.

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Rachel: Yeah.

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Terry Arnold: But they but they want to commiserate with you. So we have a running joke in my family that when someone tells you hard news. You say I'm sorry I love you, and can I buy you a hamburger?

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Rachel: And you take them out for a hamburger.

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Terry Arnold: And you sit and you eat the burger, because that way you're not talking, and they talk, and you listen

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Terry Arnold: and start putting together. Because then, because people say to me, I'll do anything for you. Well, I didn't know what to say, so I would rather somebody say, Can I pick up your kids, or can I drop off a meal or and then you could say yes or no, and you have control.

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Rachel: Right. That's that's more helpful than saying, oh, I could do anything for you. And then you're like, Okay, well, that's open ended. And right now, I'm dealing with so much that I can't even wrap my mind around that, because I can't even make my mind work right anymore.

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Terry Arnold: I was having trouble finding words I would be like and then when I was going through treatment, gas was $4 a gallon. It was 17 years ago, and gas had jumped up to like $2 a gallon to $4 a gallon. I must spend a small fortune in gas and parking, and I had so many appointments, and we were struggling not to lose our house, and we had good insurance, and we had some money. But, man, we blew through some money fast, and to try to

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Terry Arnold: ask somebody.

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Terry Arnold: I was too overwhelmed.

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Rachel: Yeah.

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Terry Arnold: I was just too overwhelmed, and I was so grateful for people that were kind and like I had friends, would send me gas cards and things like that, and I'm like they. They knew they've been through things. They had no idea how much that helped me make my appointments or people bringing meals to me. That grocery money helped make the Copays, or whatever.

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Rachel: Right? Oh, yeah, absolutely. I mean, I went from. I had a successful business to having to be on disability

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Rachel: at 37 years old.

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Rachel: It's a big.

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Terry Arnold: Change.

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Rachel: It's so rigorous, and it does so much to you. I mean.

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Rachel: even thinking about dinner sometimes was not

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Rachel: fun. I didn't have. I didn't experience a bunch of nausea, but sometimes I had it. But the problem was is that I couldn't eat.

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Rachel: I don't. I don't know if you experience that, but it was like everything tasted wrong, and it didn't matter if I use the plastic cutlery instead of the the metal. And I did this, and I did that I did all the things that they told me to do, including washing my mouth out with, you know, baking soda and salt and water, and all the things that they tell you to do. I did them all, and I still every meal tasted wrong. It tasted like oil or blood. I couldn't drink coffee anymore, which.

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Rachel: if you know me, I mean I was a barista for 8 years. I love coffee. I I love my coffee so coffee and tea, and I couldn't drink it anymore. It just I couldn't keep it down.

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Terry Arnold: Realized I was overeating because nothing tasted good, and then I would try to get satisfied. I would eat too much, and then I never once threw up all the things they think my pre thoughts of what can be like. I didn't have any of that, and I don't feel like I suffered in the sense of it was what for me was, the fatigue was so deep

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Terry Arnold: I couldn't think.

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Terry Arnold: And so it was hard to make decisions and stuff like that, and surgery for me was just like a non-event. I had no idea I thought it'd be a big, painful thing, and it wasn't. I think sometimes if we talk about our expectations.

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Terry Arnold: we can then wrap our mind around it and be mentally prepared. What I wasn't mentally prepared for was radiation.

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Terry Arnold: I thought, I'm I was kind of like I'm out of here, I'm you know, 2 thirds down, and

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Terry Arnold: and I didn't think I wish I had more respect for as a section in its own right. Because, you know, people like, Oh, you've been through Chemo. You've been through surgery. You're almost out of here, and I was trying to get back into my life, and I wasn't done.

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Terry Arnold: and I wish I'd understood that I think it would have helped me do better.

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Rachel: Everyone radiation tough, really tough.

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Rachel: And actually, you know, that's another misstep.

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Rachel: According to the specialist that I have now, she would have given it to me twice a day with the bolus, and I only got it once a day with a bolus for 6 weeks. I can't imagine what my skin would have looked like twice a day, because

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Rachel: at the end of it, like my skin was peeling off and I don't think.

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Terry Arnold: Got it.

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Rachel: At all. But I at the end I did ask for pain medication, because I was like I don't know what else. I can't sleep. I can't eat. I can't wear clothes like I need something.

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Rachel: And and you know, at that time it was appropriate to ask for it. I know it was because I was like I I need to sleep.

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Terry Arnold: And the thing is, I never like to scare. People get very scared, and I don't want to scare people, but I think also to realistic expectations we can prepare. But I think if we're mentally prepared, we can be physically prepared, and then we can do better in everything about it. And I know for me, and almost like for you.

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Terry Arnold: Radiation was hard for me, but my skin healed up quickly afterwards. It was such a head trip like, did this just happen to me?

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Terry Arnold: Skin like when she completed radiation.

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Rachel: Oh, it's awful for it went to peel off, and then after that, now I just have, like

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Rachel: almost 4 years out now I still have a tan there forever.

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Terry Arnold: Shadow.

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Rachel: But yeah.

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Terry Arnold: Right?

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Terry Arnold: Yeah, I still have that.

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Rachel: Absolutely.

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Terry Arnold: Tan.

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Rachel: It did heal faster than I thought it would, looking at it because it was I mean it was awful. It was so red and just

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Rachel: plushy. It was bad.

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Terry Arnold: That's the part I kind of wanted to get to. I know we end up with that shadow. But the thing is, I was curious, because, you know, obviously it healed. You weren't living with a wound which is good because I know it scares people, but I think we need to know.

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Rachel: Yeah.

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Terry Arnold: Now. There's 3 other things we could talk about.

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Terry Arnold: but I don't. Wanna because I know you and I don't want to get into the reconstruction all those things right now that could be a whole. Another episode.

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Terry Arnold: Oh, yeah.

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Terry Arnold: But I think what we need to do is start looking at how we want to wrap this up. And what is it that you would want someone newly diagnosed to know, or someone who is maybe being discouraged to to go

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Terry Arnold: to a special place, or you know some of the young kids looking back, what do you like? I wish I had put us all in counseling.

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Terry Arnold: I did not realize the collateral damage that happens in

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Terry Arnold: to my family, to my kids, to my husband, whatever. Looking back, there's certain things I wish I'd done. But we were so busy swimming for today.

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Terry Arnold: Is there some things like you want someone newly diagnosed to know, or someone who's in a scary place, or got the wrong care to know, because you're still sitting here.

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Rachel: Yup! I am.

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Terry Arnold: Living your life. That's that's a cool thing, right.

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Rachel: I am a statistical outlier, for sure, and I will continue to be a statistic, statistical outlier for as long as I possibly can.

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Terry Arnold: I love that. And you're being very powerful. And and you're in studies. And you're doing things. Okay.

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Rachel: Yeah, I did not just today. So I did Signatora test. That's my surveillance.

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Rachel: That.

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Terry Arnold: Okay.

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Rachel: That's kind of new. I get it every 3 months, and I gave vials for research this morning to Md. Anderson, and what I would tell people is, if you don't want to go to Md. Anderson, or you can't afford it, or you think you can't afford it, at least just go because they may work something out for you. 1st of all, second of all, give your blood to them.

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Rachel: because that's gonna help everybody going forward right? And then your lab. Even if you go back home, your lab can order those extra vials so that you stay in that Ibc registry program so that we can eventually make this better for women.

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Rachel: and so that there is a.

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Terry Arnold: I was.

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Rachel: So that nobody has to go through all this

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Rachel: and so that we can get it on page and talk about it. Talk about it. A lot like that is where I'm at with it is that I want to talk about it to everybody. I want it at everybody's table, especially in the breast cancer world because I don't know how many times I step into a breast cancer thing and they act like I'm a mystical unicorn, and I'm like, no, there's a bunch of us like.

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Rachel: there you go.

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Rachel: It's rare, but it's becoming less rare, I think, and.

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Terry Arnold: I think I don't know that it's on the rise in the sense, but what I think is, we were all misdiagnosed, and unfortunately something passed away. Now that ones of us are living better longer, and we're talking about it. I think we're going to find out. It's not as rare as they think.

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Terry Arnold: That's what I think and and we can. And like. I said we could talk about all the the coding issues and all that another time. But, like, you know, okay, so newly diagnosed you, you address that if you've got it, and you're getting the wrong advice to get to a medical center if you can, and try to team tag things and don't let.

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Rachel: Advice because I thought I was giving you right advice.

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Rachel: I really did. I? I told people I was like, Oh, there's all these people who get misdiagnosed. And there's all these people who don't follow standard of care. I thought I was getting the standard of care.

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Terry Arnold: That's got to be the most maddening situation to go through all that you went through just to find out they weren't doing it right.

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Rachel: It's it's

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Rachel: at 1st I was angry, and then I had a lot of grief, and now I feel like I'm on the other side of it where I'm like, okay. So I'm gonna share this so that it doesn't happen to other women.

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Terry Arnold: And I know you mentioned the San Antonio breast cancer symposium just a second ago you referred to San Antonio that just so, people who might not know San Antonio breast cancer symposium is the largest single breast cancer conference in the Us. It happens every December in Texas, and about 8,000 doctors go, and inflammatory is not presented on the main stage there, because rare disease aren't. But a couple of years ago, after significant lobbying from us

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Terry Arnold: and other organizations and medical institutions. They did present inflammatory on the main stage, and that's something I'm very, very proud of, and I was on the panel to see it. It was a big dream come true for me and this December you're going to join me.

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Terry Arnold: Manning our booth where we're talking to these reachers from Greg. What would you want to say to somebody newly diagnosed? Who really has got that deer in the headlight moment being told they've got the bag.

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Rachel: That it, that there's hope that every day that we push for this and that, you know.

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Rachel: Ibc network goes to bat for women to get funding for research.

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Rachel: It gets better, and every day that I go and give, you know, 6 vials of blood. It gets better. So

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Rachel: we're trying to make this better. And so just keep holding on to whatever hope that you have, because I know that we can make this better. We just have to bring it to the table more, and we just need more funding. We need more funding. We need this to be not a paragraph in a textbook. We need it to be its own book.

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Terry Arnold: I love that we need to be its own book. I think that's a perfect place to stop, and I love the fact that you're here paying it forward, and I know that you've had to go through your time of anger and your time of grief. But I'm really grateful that

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Terry Arnold: it has also pushed you to a place of advocacy, and and being a self advocate, is kind of my hot button.

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Terry Arnold: I don't think we should have to be a self advocate. We are not medical experts, but we are being advocates to make it better for ourselves and for others behind us.

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Terry Arnold: And that is what you're doing. You're paying it for it. And I would love to see Ibc have its own book.

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Terry Arnold: So

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Terry Arnold: Rachel Ford, your stories are on our website. They're on walking on quicksand. We're going to have this podcast that you can share. I'm looking forward to having you with this in December, I'd love to do another podcast with you after that, because there's so much more we could talk about. And I'd love to have your takeaways to share with other people who might be intimidated to go to something like San Antonio to show how powerful that is. So what do you think about doing a follow up.

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Rachel: Oh, I'd love to. Yeah, I'm here anytime to talk with you. I love chatting with you.

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Terry Arnold: Okay, great. Well, thank you for doing this today.

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Rachel: Don't forget to mention that later this April and.

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Terry Arnold: Yeah.

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Rachel: At the Kenny store. We're gonna do a a fundraiser. The yellow rose boot scoot.

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Terry Arnold: The yellow roast boot scoot is something that I started trying to do before the pandemic. We got shut down because we could do everything during that pandemic. I know Covid was serious, but it got in the way of a lot of other things are serious, too, like cancer. But the yellow roast boot! Scoot! We really want to be something big and significant, like the Cattlemen’s ball, which I went to that when I was young, and I've seen what a significant thing has grown into, and that is my dream for the yellow rose Boot Scoot! And you're going to be there with this this April.

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Rachel: It's my 1st time, I've tried for 2 years to come, and i'm finally, gonna make it i'm, so excited.

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Terry Arnold: Okay, we'll have that to look forward to. Well, we will be chatting again soon. Thank you so much for sharing your story, and I'm looking forward to watching you become a very old lady.

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Rachel: Thank you. Thank you so much.