While levels of support continue to improve, MBC patients and care partners both recognize that there is often a need for even MORE support to be given. A percentage of people living with MBC say that their family and friends don’t understand how their metastatic breast cancer has changed them emotionally and physically, especially during COVID-19 when patients are potentially in constant close quarters or forced to be separated from care partners due to social distancing measures.
Meet Tori
Tori was diagnosed in 2016 with Metastatic Breast Cancer (DeNovo), soon after her 30th birthday.
Since diagnosis, she has spent time as a patient advocate for Metastatic Breast Cancer research, funding, and awareness both independently and with organizations such as Susan G Komen (Columbus and as a National Advocate), The Ohio Partners for Cancer Control, Living Beyond Breast Cancer, Eli Lilly, Dr. Joe Explains, Cancer Support Community of Columbus, and many other non-profits and health systems. She is an active public speaker, writer, vlogger and blogger; and has been featured/ seen on Time Magazine, Al Jazeera News, AllRecipes.com, Everyday Health, People.com, GoodHousekeeping.com, Health.com, Our American Stories, Good Morning America, GMA Day,and various other national, state and local news programs.
Tori is active in political outreach for metastatic breast cancer and has presented before the Ohio House and Senate Cancer Caucus in partnership with other advocates during Ohio MBC Action Day. She has received proclamations from Ohio Governor John Kasich and Franklin County Commissioners for organizing the first ever Ohio Metastatic Breast Cancer Action Weeks in September of 2018; and the first ever Tori Geib Courage in Action Award named for her advocacy by Komen Columbus in 2019.
She has previously served as the Honorary Chair of Komen Columbus’ Race for the Cure and a mentor for Living Beyond Breast Cancer’s Hear My Voice Program, from she is a proud alumni. She currently serves as the Co-Chair of Patient Centered Services for the Ohio Partners for Cancer Control.
Tori is a graduate of Mount Vernon Nazarene University (BA Criminal Justice & Sociology) and Columbus State Community College (Culinary Arts/ Baking and Pastry & Travel and Tourism). She currently lives in Central Ohio with her family and dog Georgie. She enjoys traveling every chance she can.
Transcript
Adam (00:03):
Support for the Real Pink podcast comes from Lilly Oncology. People living with metastatic breast cancer or MBC deserve more. Lilly Oncology aims to bring more awareness of MBC through more education, more research and more dedicated solutions to support the women and men living with MBC and the communities that surround them. Learn more at the More for MBC Facebook page. 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 today.
Tori (01:30):
Thank you for having me. I’m so excited to be here.
Adam (01:32):
I’m really excited to talk to you to hear your story. And let’s just start there. Tell us a little about yourself and your breast cancer journey.
Tori (01:40):
Yeah, so I was actually diagnosed in 2016 at the age of 30 with metastatic breast cancer. I was what they call metastatic breast cancer, Denovo. I’ve never known early-stage breast cancer. Do you know it means that you were diagnosed from the beginning of your treatment with early stage? Now, originally they thought maybe I was early stage because I was so young. However, I had been having back pain actually for about a year and we realized after doing some scans that my breast cancer in the bone had actually been missed for about a year. Once we found out that I had metastatic breast cancer, one of the first things that unfortunately I had to do was retired at 30 years old. I was only two years out of college at that point. With my second degree, I was working full time as a chef at a great cancer hospital here in Ohio.
Tori (02:29):
And on top of that, I was also working at a ski resort seasonally all time as a restaurant food and beverage manager. So I was working sometimes 70 hours a week and of course I was going to be tired. Of course, I was going to be having some back pain. I was lifting 50 pound bags of flour and I was occasionally having to change out cakes. So know of course I’m going to be sore and tired. And I also like to do my snow sports during the winter on top of that. So when I was diagnosed, there’s a vertebrae that was right the middle of my spine. That was 70% crushed. And because it was 70% crushed, I had a weight limit at that point of five pounds, those 50 pound bags I was lifting or those kegs I was helping to lift even the small ones.
Tori (03:13):
Those kind of actually broken my back to the point where I could have become paralyzed. So I unfortunately at 30 had to go on a retirement. You know, it was for me, very difficult mentally dealing with that and just being out of college and being in this career that I love, that was actually my second career and also being 30 and seeing all of your friends kind of thriving because we’re in that adult milestone of people, having babies, getting married, some people buying their first homes or at least moving out of their first apartment. Those were all things that I wasn’t able to experience at that point because of my cancer. One of the things that happens when you go on disability is you have a waiting period before you can get your first check on disability and that’s six months. So any 30 year old, two years out of college with student loan debt is never going to be able to go six months with no paycheck, let alone six months with breast cancer and now terminal breast cancer with no paycheck.
Tori (04:13):
It’s just not possible. So I ended up moving home with my parents and I was very lucky to have that. However, even with that, after about a year and a half, I am having to file bankruptcy because on top of that six month waiting period for that first disability check for the disability insurance, that goes along with that rear healthcare, there’s a two year gap you have before you can get healthcare coverage. However, I’ve been through multiple different treatments. I’m actually on what they call my 11th line of treatment with metastatic breast cancer. It’s different from early stage breast cancer because early stage breast cancer, you’re counting down in treatments and you get to ring the bell when you’re done with those treatments in metastatic breast cancer, you’re counting up in treatments. So you’re on a certain medication, as long as it’s working any other chronic disease, which we hope that this can be treated chronically.
Tori (05:07):
It’s not chronic yet. However, we want to treat it like a chronic disease. You want to be on something as long as it’s working. However, when that stops working and the cancer grows or moves from another area, which is called progression, that’s the point where we have to change treatments and I’ve had to change treatments 11 times on top of that, I’ve also had six rounds of radiation, the different parts of my body, including bone and my brain. Most recently, early stage breast cancer. You’re always going to deal with the scars of your cancer, but metastatic breast cancer. You have to deal with the fact that you have a five year survival rate of less than 25%. So you’re looking at 75% of the people that I was diagnosed with on the same day with metastatic breast cancer, not being alive at a five year Mark.
Tori (05:54):
And I’m at four and a half years right now. So there’s been a lot of ups and downs with this disease. Obviously, every time you hear that a treatment’s not working, it’s a punch in the gut because you’re going to a new medication and you don’t know if this is going to work. There’s some great technology out there right now called genomic testing that can look at the DNA for cancer and find targetable mutations. However, when, when you go on a new medication, even if that test says this might work for you, it’s always a mite. It’s never a guarantee. So that’s kind of been what I’ve been dealing with for the last four and a half years now.
Adam (06:28):
Wow. That is quite the story. And I would imagine it takes a lot of support and I know it’s difficult and I think you are sharing a lot of wisdom with us right now. So I appreciate that. So let’s, let’s talk for a minute about the emotional side of this depression and you experienced depression, loneliness, obviously stress. And so how do you,
Tori (06:50):
As far as clinical depression, I don’t necessarily know that I fit that category. I will say that I have experienced a lot of grief through this diagnosis. A lot of grief for the life that I thought that I was going to have a lot of grief when you get that scan back. And it’s not what you hoped for. And you know, for me personally, I do advocacy now full time as a volunteer. So one of the beautiful things about advocacy is you get to be around all of these people that have the same disease that you do and, you know, find it a comradery. But one of the hardest part is those people because of the statistics are dying and, and you’re dealing with a lot more deaths than even the normal patient who might be in an average support group, because you might have a couple people in your support group who die within a year, but when you’re doing advocacy and you’re doing what I call immersive advocacy work, where you’re doing this full time in the United States, there’s 116 people a day that die of metastatic breast cancer.
Tori (07:51):
And you’re constantly exposed to the statistics. And another thing that’s great about this disease is because of being an advocate. I go to the conferences, I know what drugs are out there, but again, that’s a double edged sword because I know what drugs are out there. And I know in my options are becoming more limited. And so for me, I wouldn’t necessarily call it depression, but I would definitely label it as grief mentally. The thing I struggle with the most is probably anxiety. Just because any time that you have a scan for you have a new pain in your body, and you’re wondering, you know, is this cancer is this spreading of the cancer? Is my medication not working anymore. But I think the anxiety is probably the most prominent thing that I’ve personally dealt with. Aside from what I would say is more grief than true clinical depression.
Adam (08:44):
Wow. Well, thank you for sharing that. So kind of related to that, let’s talk for a minute about what do you do to motivate yourself and others when dealing with mental health impact of NBC, what resources do you recommend for those that are seeking some mental health support?
Tori (09:00):
So I heard a really amazing talk recently, and it was given by a pastor that is in my denomination of my church. He was not able whatsoever. And she was talking about in Vietnam, the soldiers who were in the prison camps, it was almost ironic that the first people who died in the prison camps were the people that were the most helpful. And it was always the people who said, you know, we’re going to be saved by Christmas. And then Christmas came and they weren’t saved. And then it came to Easter and they said by Easter, we’ll be stayed in Easter. They weren’t saved. And so they died of disappointment and they died at that lack of hope. And so for me, it, it becomes this thing within myself. I always try to still have hope, but I think when you put strict standards on your hope is when you start feeling more disappointment.
Tori (09:52):
And when you start grieving more mentally, I’ve seen, you know, a lot of patients that go into more depressive States when they realize that in six months, you know, the cancer’s not gone, they’re not cured of their cancer, that this is a lifelong thing for them balancing hope with the reality of the disease. Because I don’t think that they’re mutually exclusive. I think that you can have all the information and still be hopeful. When you look at the longterm statistics of this disease, the only two to 3% will live a normal lifespan, but at the same time, nobody’s names are etched in that two to 3%. So we all hope to be in that group, even if it is small. We hope that that group can expand for me looking, not just at the resources that are out there. I mean, there’s tons of resources.
Tori (10:42):
There’s great mental health resources out there. There’s different counseling options. There’s group counseling, there’s even counseling outside of cancer. Specifically, there are some great grief support groups and that can really help you. And it helped me deal with the loss of my friends along the way, and learned some great habits to kind of work through those things for people that have a spiritual background. I mean, this is the time where you really need to rely if you’re a faith based person on those faith communities that you’ve been a part of your whole life. You see people that have this diagnosis. And one of the things they do is they gravitate away from their faith based community because they feel some type of betrayal from God or from, you know, whatever their, their belief system is. And really, you know, that’s the time where my church especially has really stepped up for me. I have people that will just send a card or, you know, give me a call or a taxed and say, how are you doing? And, and, and they really want to know, and that’s the great part.
Adam (11:44):
I’m glad that you have that community. So tell us just a little bit about how this current COVID-19 pandemic effected you in terms of your everyday life treatment and mental health. Do you have any tips for people as we continue to adjust to life based around a pandemic?
Tori (12:04):
I think honor, the fact that this is frustrating as hell. Like don’t try to act like, Oh, COVID is not a big deal. No, it’s wrecking us. Even people that don’t have cancer or terminal cancer are struggling right now. The fact that we need to pretend that we’re all in this together. And every time I see that commercial, we’re all in this together. I’m like, are you serious right now? Come on. I know that we want to join together as much as possible, but the impact of COVID-19 on different communities is exorbitant, not even just the breast cancer community, but you look at women of color in the breast cancer community who died at 40% of a higher rate than white women. And look at what access to care issues are happening for people in rural areas like myself. Now, luckily, a lot of telemedicine is happening right now, and that’s something we’ve been striving for for a long time.
Tori (12:57):
It’s sad that it took a pandemic for people to get on board with telemedicine, but at the same point, you know, people that don’t necessarily have the technology to access this telemedicine are getting left behind personally COVID has been frustrating when COBIT first happened. This year, my cancer was progressing, which means that it was spreading. And at that point we were looking at going on a new line of therapy. And my next logical line of therapy was a clinical trial, unfortunately because of the academic centers having to reduce staff. And a lot of those clinical trial, dollar’s going to COVID cancer. Clinical trials have been very much impacted by COVID and I wasn’t able to access the clinical trial that I needed because of Kobe. It wasn’t available at my cancer center anymore. During that time, when we were trying to find what we’re going to do for the next treatment, we’re looking at a couple options that were still available at the time for clinical trials.
Tori (13:59):
I was unfortunately diagnosed with brain metastasis and brain metastasis also disqualifies you from clinical trials. I was just, I’m doing a study and it’s up to 80% of metastatic clinical trials. You’ll be disqualified for if you have brain metastasis, even though a lot of those drugs will be used on people with brain metastasis. So it’s very frustrating, even then, I think, you know, one of the things we talk about in cancer care is have that person go with you to your appointments, never go to an appointment alone, have somebody there, even if they’re not holding your hand, they can be taking notes for you. And with this pandemic, you’re having to go to these cancer appointments by yourself. They’re not allowing visitors, they’re not allowing support persons. So for me, when I heard that I had brain metastasis and when I heard that my brain met, had eventually progressed five weeks later, it actually had in size.
Tori (14:52):
I had no one there with me. I had to do that by myself. So I think there is a certain strength that Kobe is kind of forcing upon people, but at the same time, we shouldn’t have to go through this alone. And it’s, it’s very hard to go through this alone. I had an, a very severe allergic reaction to a chemotherapy drug. Luckily they were able to get to me right away and get the allergic reaction under control. But usually my mom would be there with me. My mom’s a nurse. And I think for me being someone who’s been in clinic so long and made relationships with my nurses, I was able to have one of my nurses who was there, kind of be my support person through that. But COBIT has been so hard on so many people, but I think when you’re looking at people with new diagnosis or progressing diagnosis that can’t have their husband or support person, or for me, my mom, they’re holding your hand through that. I think that’s really difficult to go through.
Adam (15:50):
Do you think your family and friends understand how NBC has changed you emotionally and physically?
Tori (15:59):
Yes and no, but I think a lot of it has kind of been my fault too, because I’ve protected everybody so much from the changes. I think that on some of the medications, the side effects are too difficult to hide and people could kind of see those a little bit more. But at the same time, for example, I have a Walker and I have a cane that I can use to assist me with walking because my cancer’s gone to both of my hips. And it’s very painful to walk at times. But at the same time, I’ll push myself and not use those when I’m with friends or with family outside of my house, just because I don’t want to be seen as weak. And I don’t want to be seen as the person needing help. And everyone says, well, nobody cares. But at the same time, when you’re out at the mall and you have people staring at you and you look otherwise fine, because up until recently, I hadn’t lost my hair.
Tori (16:54):
I didn’t lose my hair until my 10th line of treatment. And so you have this, you know, seemingly looking healthy 30 year old with her makeup on and her hair done and using a Walker. And you’re like, well, what’s wrong with her? And it’s the looks that you get and the stigma around it. And sometimes it’s working through the stigma yourself and the people around you really don’t care. And it’s more that you care and you don’t want to be seen as the weak person in the group. And you don’t want them to see you as the person that’s changed because then your story to them becomes your cancer. And it doesn’t become the fact that I love to go to parks and I love to snowboard. And I love to do all of these different things. It becomes well, Tory has cancer, and that’s the first thing that comes to mind when they think of me.
Tori (17:42):
And that’s never the first thing I wanted to come to mind. I wanted to be able to have cancer, be a part of myself, but I never wanted to be identified with it. That’s part of why I don’t call myself a survivor because I’m fine just being called a patient because it’s a part of my life, but it’s not what I want to be identified by. I love that. But in general, I think it’s hard with friends and family because there is so much that’s changed. And, and, you know, again, it comes back to that how much has been the cancer and how much has just the fact that I’m not 20 anymore, because I was diagnosed at 30. I mean, we’re all going through that life transition at that age. And there’s, there’s a lot of friendships and emotional ties that have been, I wouldn’t necessarily say damage, but they’ve been changed for me.
Tori (18:30):
One of the hardest things and something I can’t really participate in anymore is when my friends have baby showers, that’s a huge trigger for me just because that was something I was looking forward to so much in my life is one day, you know, having my own kids. And that’s not in my story anymore. Unfortunately, my cancer took away my fertility. So I think things like that, it’s your friends still want to have you involved. They still invite you to things a lot of the times, but sometimes it becomes too much for you to deal with and you need to kind of set your boundaries. Now at the same time, I’ve had friends that have invited me to things and I’m like, well, why didn’t you invite me to that? And I’m like, well, you have cancer. I thought you would be tired. And I’m like, you guys need to still invite me and let me make the decision.
Tori (19:17):
The people that are the closest with me understand that. And they’ll still ask me and invite me, but it took me kind of standing up for myself and saying, let me decide when it’s too much for me, I can take a lot. I’m not going to be one of these people who just kind of sinks into the background or lets myself be ignored. If my friends are all going to Coachella, for example, they better ask me to go. Like, I don’t care if I have to use my Walker. I’m going. That was great. Just not during COVID-19. So that was great.
Adam (19:50):
Tell us what resources you use for support and what do you recommend for others? Can you share any common, specific resources that you may have used in the past or use currently?
Tori (20:03):
Yeah, so I think being an advocate, I have access to a lot of support than I wouldn’t have if I was just a regular patient, but at the same point, there are so many resources that are available right now. And one of the great things I’ve been able to do with my local Coleman organization is to build a support group online for people living with metastatic breast cancer and not just women with metastatic breast cancer, but all people of all genders with metastatic breast cancer. Because a lot of times we’re leaving out men and we’re leaving out people who are transgender from a lot of these groups. So making sure that groups are inclusive because if breast cancer is not going to discriminate, we don’t have the right to either not that we ever would have the right to discriminate. However, making sure that people have adequate support is one of my passions of my work on top of that things that I’ve used, you know, my faith community has been so amazing, especially on days where I just want to lay in bed and just be like, screw it.
Tori (21:04):
I’m not getting up. I’m in pain. I don’t feel good. I don’t want to do anything. Sometimes getting those cards in the mail or just my pastor’s wife will come over. And she’s, I, I did baking and pastry arts. That’s what my degree is. And for my second degree, my first degree is actually in forensic science very far apart. Wow. Yeah. But my second degree was in baking and pastry arts. And she’s used a couple of my recipes for muffins and she’s written little notes with it and said like, I hope this is as good as yours. And I’m like just the thought that somebody would go out of their way to make sure that I was having a good day. I mean so much. And that’s, that’s such a blessing to have also whether you’re in a support group as a patient, or whether you’re in an advocacy group, if you were an advocate, building relationships with other patients going through the same thing that you’re going through, or even building relationships with people who are longterm survivors with this disease.
Tori (22:01):
Because a couple years ago, when I was getting into year three, I was like, you know, I’ve had so many people I was diagnosed with, or that were diagnosed after me that are gone now. Like my mentors are all gone. I needed to look at somebody who was living with this disease and thriving with it. And you’re able to see that in some of these support groups and you’re able to see that. And some of these advocacy groups, I actually have a friend who’s been living with metastatic disease for almost 20 years and she has brain metastasis. So for me as someone with brain metastasis, I didn’t have to think about, you know, there’s no hope left because I could look at her and say, well, she’s still here. I could still be here too while it’s fantastic. This has been great. I really appreciate you sharing your story, sharing your wisdom with us. Thank you so much for joining me. Thank you so much for having me. I appreciate it.
Sponsors
The More for MBC Facebook page is a Lilly-owned page that aims to provide people living with metastatic breast cancer a platform to engage.
About This Episode
Intro and outro music is City Sunshine by Kevin MacLeod. Ad music is Trusted Advertising by David Renda licensed from Fesliyan Studios Inc.