[00:00:00] Adam Walker: From Susan G. Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:17] The first 30 days after being diagnosed with breast cancer can feel devastating. You’re processing a lot of information, dealing with emotions, and often trying to figure out what to do next. Joining us on Real Pink’s 400th episode today is Jennifer Omholt, a journalist and 24-year cancer survivor who was diagnosed with stage three breast cancer when her son was just 16 months old.
[00:00:42] In the wake of her diagnosis, she desperately searched for something to ease her fear and confusion, but found nothing that offered comfort or clarity. Over the next two decades, she set out to create the resource she wished she’d had so that no one would need to face the shock of a cancer diagnosis alone.
[00:01:01] Jennifer’s here today to share her story and what helped carry her through her breast cancer experience. Jennifer, welcome to the show.
[00:01:08] Jennifer Omholt: Thank you. It’s a pleasure to be here.
[00:01:10] Adam Walker: Well I appreciate you, you taking the time. I’m, and I’m looking forward to hearing your story and then also hearing about y- what you’ve created.
[00:01:17] But let’s start with your cancer story. Can you tell us about your diagnosis and the treatment that you went through?
[00:01:23] Jennifer Omholt: Yes. When I was diagnosed with stage three breast cancer, as you mentioned, I was 45 years old, and I had a 16-month-old son. Overnight I was thrown into a world where I didn’t know what was going to come next, and I was horrified, and I wanted to make sure that I was going to be around to to take care of my son.
[00:01:45] So I did everything that I could to ensure that I would survive. As for my treatment, I had a lumpectomy and the doctor told me that there was only a 4% chance that it was cancerous, but when I woke up in the post-op room, she told me that she was wrong and that indeed it was cancerous, and that I needed to begin I need to begin treatment immediately what followed after that was six months of chemotherapy, and during chemo, I pursued genetic testing because it was told that my cancer was very aggressive, so I wanted to pursue genetic testing.
[00:02:33] And as a result of that, I needed to do I chose to do a bilateral mastectomy and an, an oophorectomy. And then after my oophorectomy, I had radiation, and that was followed by several rounds of DIEP flap reconstructive surgery, and then five years of hormone therapy. Oh, I forgot about radiation.
[00:02:59] There was radiation in there after my after my surgery.
[00:03:04] Adam Walker: That is that’s quite the regimen. That’s a lot. It’s a lot to hand- I mean, it’s a lot to handle and also to navigate while having a young child. I think you said sixteen months old. So, so how, I mean, how are you able to cope with that while still being the mother to a sixteen-month-old child?
[00:03:25] Jennifer Omholt: Well, it was a lot to deal with, and as I mentioned, I was determined to do everything I had in order to survive, so. But what struck me most was that nothing, there, there was nothing available to help me figure out what to do when I was first diagnosed. I was searching for a book that would help me figure out how to deal medically, emotionally, and otherwise, and there was nothing there.
[00:03:51] So… And I was in shock and expected to make the most important decisions of my life, and so I felt that it was a lot for me to figure out, so I was fortunate. I had my in-laws to help take care of my son, and I had my sister and brother and father that helped with the research side of things. My sister researched conventional Western medicine for me.
[00:04:14] My brother researched alternative approaches to healing. My father kind of weighed in on all the options so I could figure out how to proceed next.
[00:04:24] Adam Walker: So- So you made it like a team effort. I love– family team effort. I love that.
[00:04:29] Jennifer Omholt: Yeah, and then I also turned to all these complementary approaches to healing to help kind of ground me.
[00:04:35] I did Jin Shin Jyutsu, I did qigong, I did meditation, I did guided imagery, somatic yoga, and they all helped to ground me and reduce the amount of fear that I was dealing with at the time. And eventually, I learned that I didn’t have to figure out my entire future. I only had to figure out what to do next, and dealing with one– dealing with things one step at a time made it seem a lot more manageable.
[00:05:00] Adam Walker: All right, so I got to ask then. You just mentioned a lot of interesting things that you did. Was any one of those m- particularly more helpful than another? Like, does one sort of stand out as, like, the most helpful to you, or were they all sort of equally helpful?
[00:05:14] Jennifer Omholt: Well, my, my hospital had an integrative program that was funded by donors, and the one type of modality that I had no knowledge about beforehand was called Jin Shin Jyutsu.
[00:05:29] It was a Japanese, a very gentle Japanese healing modality that I had exposure to every week for many months. And I would say that helped me with anxiety, it helped me with, kept me calm, it boosted my immune system, it enabled me to sleep better. It helped me reduce burns during radiation.
[00:05:55] So the Jin Shin Jyutsu was profound for me.
[00:05:58] Adam Walker: Wow. Okay. Yeah. Wow, I’m going to have to look that up. I kinda love that. I’ve not heard of that, so now I’m very curious. Okay. Well-
[00:06:05] Jennifer Omholt: Yeah.
[00:06:06] Adam Walker: All right. So, so you mentioned that you look for a resource to be your guide through this process, and you couldn’t find one, so then you created one.
[00:06:17] It was a family research affair. Yes. What, like, like tell us more about that in that creation process.
[00:06:27] Jennifer Omholt: Well, as I mentioned, when I was first diagnosed, I was looking for a book that could help me figure out what to do next. So when I couldn’t find it, as a journalist, I decided to do something that was instinctive, and I began I created an outline.
[00:06:43] I be- I began outlining a book.
[00:06:46] And it was the only way that I knew how to make sense of all the chaos, yeah. And-
[00:06:53] Adam Walker: Right.
[00:06:54] Jennifer Omholt: At the time, I thought I was organizing information, but what I was doing was managing my fear. The book gave me a sense of control over a situation that, that was out of control.
[00:07:06] So in the midst of my panic, I researched all the treatment modalities, all the treatments that I need to go through. I interviewed people. I kind of took on my role as journalist. It allowed me to feel more at home in a situation where I was completely a fish out of water. And so I eventually wrote the book that I ended up needing most myself, called Just Diagnosed: A Survivor’s Guide to Navigating Cancer.
[00:07:34] Adam Walker: Oh, I love that. Oh, that’s so good. Such a good title, too. Okay that’s, I like that. Okay. So that’s basically… So, so let’s tap into your expertise for a moment. Let’s talk about the first 30 days after someone receives a diagnosis. So they’ve they… What’s the first thing they should do after they hear the words, “You have breast cancer”?
[00:07:57] Jennifer Omholt: What I recommend is that they take a deep breath, and that’s actually the title of the first chapter in my book, because deep breathing is a simple yet powerful way to calm the nervous system, and people are anything but calm when they’ve just been diagnosed. So just to get grounded, take a deep breath, and then I recommend that you also slow down.
[00:08:21] You don’t need to figure everything out in the first- First 30 days you kind of do, but not the first week, not the second week you don’t need to panic search the internet. You don’t feel compelled to tell everyone that you’ve got cancer. Don’t assume that you need to make treatment decisions right away, because you don’t.
[00:08:41] Cancer creates this tremendous urgency psychologically, but in many situations, you have enough time to gather the information you need for– to deal with your diagnosis. You don’t need to solve your cancer right away. That’s what you need to remember. You only have to take the next step.
[00:08:59] Adam Walker: I think, I mean, I think what I’m hearing you say, like you said breathe, right?
[00:09:03] You said slow down. You don’t need to solve it immed- Like, like, like, I think what I’m hearing you say kind of is like, just pace yourself. Like that– I feel like… Because I would imagine there’s this urge to solve it instantly, but you can’t. And so I think you have to recognize you can’t solve it instantly, and so all you can do is slow down to your point to make, take the next best step, right?
[00:09:27] Jennifer Omholt: Right. Don’t future trip. It’s very easy to future trip when you’ve just been diagnosed with a life-threatening illness. But if you just think about, “Okay, what do I need to do next?” And do that, and trust that will get you to where you need to go next. It’s a lot more sane approach.
[00:09:46] Adam Walker: Yeah.
[00:09:46] What’s your next best step? That’s a good question to ask yourself. I like that a lot. Okay. Now now, do you have any advice or tips on how to build a medical team?
[00:09:59] Jennifer Omholt: That’s one of the most important things that you do after a cancer diagnosis because I, I think pulling together the right team is critical.
[00:10:11] I didn’t have a team. I had to go-
[00:10:13] Searching at different facilities and talking to different doctors and figuring out what I should do next. And so all of my doctors were not under one roof, but when you work with a team that is under one roof, it makes a tremendous difference. A good friend of mine was just recently diagnosed with breast cancer, and she was at a major medical center in the Bay Area, and after several weeks, they provided her with an entire team of doctors, including a breast cancer oncologist that specialized in her type of cancer-
[00:10:47] Which
[00:10:47] is what you want to do. You always want- Yeah … to find an oncologist that specializes in your type of cancer. They provided a plastic surgeon, a medical oncologist, and a radiation oncologist, all of whom work together to have access to the same imaging, pathology, and test results- which is key. So they’re all collaborating, and they’ve all got your back.
[00:11:09] Right … s- so that was really important. And also remember that credentials aren’t everything. It’s important that your doctor has credentials, but they also need to hear you and make you feel comfortable when you’re asking questions. That’s key. If your doctor doesn’t make you feel comfortable, then you need to find another doctor.
[00:11:29] You need to find someone that, that you trust. And remember that your medical team is bigger than your doctors. It also includes oncology nurses, patient navigators, social workers, mental health professionals, integrative healing professionals, nutritionists, and other support specialists who all play an important role in helping you get the treatment that you need and finally, I want to stress the importance of getting a second opinion and having the second opinions be part of your team.
[00:12:01] because we- wanting a second opinion is not an insult to your doctor. It doesn’t necessarily mean that you don’t trust them. You’re making decisions that have life lo- lifelong consequences, and you need to be confident that you understand your diagnosis and that you know all the options that you have available to you.
[00:12:18] So be sure to always get a second opinion .
[00:12:23] Adam Walker: That’s right. Yeah. I love that. That’s a good final thought there and I think so important as well. All right. So, so let’s walk through that, that first oncology appointment, right? How can someone best prepare for the types of questions they should be asking or even how to capture the answers to those questions as well?
[00:12:46] Jennifer Omholt: Yeah. Well, to start with, write your questions down beforehand so you walk into the appointment with your questions. “What exactly is my diagnosis? What stage is it? What are my treatment options? Why are you recommending this treatment? How soon do I need to make a decision?” and then bring someone with you that can be another set of ears and that can take notes for you, because you’re in a state of panic, and it’s very hard to dif- to absorb all the information that’s coming at you.
[00:13:19] It comes at you hard and fast, and you’re kind of in a in a state of panic. And so for that reason, I recommend recording the appointment. You always have to ask whether you can… You have to ask for permission to record, but 90% of the time they’re fine with that. And so I used my phone, and so I had recordings that I could listen to later when I was in a calmer state.
[00:13:45] And when I listened to things, questions occurred to me that I should have asked that I didn’t ask, but then I could email to my doctor later, and that was very helpful. And don’t be embarrassed to ask your doctor to explain something. If you didn’t understand it the first time around ask them again.
[00:14:04] And finally, you want to be sure to ask your doctor, “If someone you loved were making this decision, what would you want them to understand?”
[00:14:12] Adam Walker: Ooh. I love that. That’s such a great question.
[00:14:17] Jennifer Omholt: Yeah, that’s a really important question.
[00:14:19] Adam Walker: That might be one of the better questions I’ve heard I heard on this show.
[00:14:23] Like, that’s a really good… I’m a– Okay, I’m going to need to write that one down. I appreciate that very much. Okay. Now one of the, one of the, the key themes- A- across we’re, this is episode 400 that we’ve been talking- Yeah … a lot about this. And we-
[00:14:40] Jennifer Omholt: I’m honored about the 400th episode.
[00:14:43] Adam Walker: Yeah, it’s exciting, right? It… and one of the key themes across all episodes that comes up just all the time is the idea of advocating for yourself. And I think for a lot of people that’s a very difficult thing to do. So, so I wonder can you talk a little bit about that? Like, how can people best advocate for themselves and why it’s so important?
[00:15:07] Jennifer Omholt: Yes. Learning how to advocate for yourself may be one of the most important skills that you can develop after a diagnosis. Doctors bring expertise, but patients bring something equally important, their values, their priorities, their instincts, and their questions, and those all have to be taken into consideration.
[00:15:26] Here’s an example of a situation where I need to, needed to advocate for myself and it made a huge difference in terms of what my treatment ultimately became.
[00:15:38] I mentioned earlier that I got tested to see if I had the BRCA gene.
[00:15:44] The hospital that I went to where I had a genetic counselor recommended that I not get the test because there was no history of breast cancer in my family.
[00:15:56] And so she said, “I wouldn’t waste your time going down that path.”
[00:16:01] But my gut and my instincts told me otherwise and I insisted and when the result came back positive-
[00:16:10] It changed everything. Yeah … and so, but I wanted to be sure that test was accurate, so I asked them to repeat the test with a different lab.
[00:16:19] And so when the results came back the same from the second lab, I said, “That’s it.” Because the results had such huge implications for how we would proceed with the treatment I chose two risk-reducing surgeries that I wouldn’t have had otherwise and that was- My, a bilateral mastectomy and an oophorectomy which was the removal of my ovaries.
[00:16:43] Adam Walker: Yeah. And- I mean I love how you said like, you trusted your gut on that and to me, like that’s the thing- That we always come back to on this show with advocating for ourselves is over and over again, i- if you feel it in your gut you’ve got to trust that and push and advocate for yourself to get the treatment you need.
[00:17:04] Jennifer Omholt: And advocating isn’t about being combative. I think a lot of people are worried that they’re being combative. It’s about asking questions until you understand the answers.
[00:17:13] Adam Walker: Yes, that’s right. That’s right.
[00:17:15] Jennifer Omholt: That’s great. Yeah. And also, a second opinion can be invaluable even when nothing appears to be wrong- it can confirm the original recommendation-
[00:17:25] Reveal another option, or it can simply give you greater confidence because you feel like you’re on the right path.
[00:17:31] Adam Walker: I love what you said about a second opinion. If we’re willing to get a a second opinion or a second quote for things done on our house like a roof or floor, we probably should do it for our health, too.
[00:17:40] I think that’s really important.
[00:17:41] Jennifer Omholt: I’m a big advocate of second opinions. I made a huge mistake when I was first diagnosed. I trusted that doctor who told me to get the lumpectomy, that was the way to go, because she said it was only a 4% chance that I had cancer. But I should have got…
[00:18:00] If I’d gotten a second opinion, they would have said, “No, you don’t go straight to the lumpectomy. You get a biopsy.” and to have her cut into a very aggressive cancer was very dangerous. So I kicked myself for not getting a second opinion about that But anyway.
[00:18:18] Adam Walker: Let’s talk for a minute about emotional toll.
[00:18:22] The emotional toll of cancer is enormous. How can our listeners manage their emotions and learn how to accept help from others?
[00:18:31] Jennifer Omholt: That’s a huge issue. A lot of people– Accepting help isn’t surrendering your independence. It’s allowing people who care about you to help carry the load. And so you’re going to feel fear and grief and anxiety, but you got to allow other people to step in and help you with that.
[00:18:48] So when I was first diagnosed, the first person that I called was my sister, and what she said was, “If you have cancer, I have cancer.” And that was huge for me, knowing that she was there and that I wasn’t going to need to face this alone. That was key. Also in-inform-information became my, the antidote to my fear.
[00:19:12] The more that I could learn about my cancer and what treatments I needed to survive, the more comfortable I felt. So basically it allowed me to feel as though I was more in control in a situation where everything was spinning out of control. Now, even though I had family and friends, and I had lots of information at my fingertips I still had a lot of sleepless nights and had a lot of anxiety about whether or not I was going to survive this ordeal.
[00:19:45] Consequently, I ultimately decided to go to a cancer support group, which is something that I had put off for a long time because the concept of dealing with a room full of other people’s pain when I could barely deal with my own pain was something that I didn’t welcome. I didn’t think I could handle it And I thought, “You know what?
[00:20:07] You only need to go once. If you like it, you can stay and you can go more. And if you don’t like it, you never have to go back.” Yeah.
[00:20:13] Adam Walker: Yeah.
[00:20:14] Jennifer Omholt: So that was huge.
[00:20:16] Adam Walker: And Did you stay? Or did you-
[00:20:19] Jennifer Omholt: I did because the relationships that I formed were- profound, and each session was so uplifting. As it turned out, it was just very fortunate, we were all going through the same thing at the same time.
[00:20:32] So the amount of information that came through, and the medical information that we all shared about our local medical community was very helpful to learn about what other doctors did for other patients. And I ultimately changed my oncologist because somebody had recommended theirs and I wasn’t particularly thrilled with mine at the time.
[00:20:57] So I was able to find an amazing oncologist that took me through my treatment and answered all of my questions and made me feel very comfortable, and changed my whole thing. So that was great.
[00:21:12] Adam Walker: That’s amazing. I love that.
[00:21:14] Jennifer Omholt: Yeah.
[00:21:14] Adam Walker: The power of community. Yeah.
[00:21:15] Jennifer Omholt: And I think it’s really important for people to remember to give people suggestions when they ask, “What can I do?”
[00:21:22] Don’t say, “I’ll let you know.” Say, ” I could really use help with dinner on Thursday night. I’ve got appointments all day long, and if you could drop off dinner, or if you wouldn’t mind sitting in a chemo session with me, I’d really appreciate that. If you could walk the dog while I’m out all day, that would help.”
[00:21:43] Just give them specifics so that they can do something and feel like they can contribute to your situation, because people feel very helpless and don’t know what to do.
[00:21:52] Adam Walker: They do. They do. They don’t know what to do. They don’t know what to say. They need guidance a- and and yeah, if you can guide them I think that’s great.
[00:21:58] Yeah. And you can get help doing it too, right? So, so important.
[00:22:01] Jennifer Omholt: Yeah.
[00:22:02] Adam Walker: So so what… Jennifer, I wonder looking back and you’ve had you’ve had some time to sort of digest what you went through and what that was like, what is the biggest thing that you wish you’d known when you were going through that period of your life?
[00:22:20] Jennifer Omholt: I wish I’d known that the horror that I felt when I was just diagnosed wasn’t something that I was going to feel forever.
[00:22:29] Cause when you’re first diagnosed, cancer can feel as though it’s swallowed your entire life. And but gradually you learn the language, you get comfortable with what you need to do and you begin to get, gain a sense of control.
[00:22:47] So I just wanted to feel as though I could wake up and not have cancer be the first thing that I think about when I wake up in the morning. But the experience that frightened me more than anything ever had eventually led me to write Just Diagnosed- Yeah … and the book that I so desperately needed and couldn’t find when I was first diagnosed, when I was told, “You have cancer.”
[00:23:15] So but 24 years later, I’m incredibly grateful to still be here, and I have my, my 16-month-old toddler is now a 26-year-old man.
[00:23:29] Adam Walker: Wow. I love that. I love that. So- That’s amazing …
[00:23:33] Jennifer Omholt: things have evolved.
[00:23:34] Adam Walker: Things have evolved. That’s great. Well and I just want to make sure I don’t miss it too, so you said your book is called Just Diagnosed.
[00:23:41] I assume it’s available everywhere people buy their books. Is that- Yes … is that right? Okay.
[00:23:45] Jennifer Omholt: It’s available everywhere. I mean, yes I recommend getting it at your local bookstore, but if it’s not there, it’s always on Amazon.
[00:23:52] Adam Walker: Yeah, that’s fair enough. That’s fair enough. Well, well, Jennifer, I mean I appreciate you being the 400th guest and I appreciate your perspective on this.
[00:24:00] I think it had a lot of value and sort of tied together so many of the different themes that we’ve talked about over so long in so many episodes. And you said some, some pretty fantastic things. So really appreciate you joining us on the show today, and thank you for all you’re doing for the cancer community.
[00:24:15] Jennifer Omholt: Absolutely. I’m happy to help.
[00:24:21] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, visit realpink.komen.org, and for more on breast cancer, visit komen.org. Make sure to check out @susangkomen on social media. I’m your host, Adam. You can find me on Twitter @ajwalker or on my blog, adamjwalker.com.