Day 117: It Is What It Is [Dr. Tita Gray]

Eva (00:08):
This is a story about what happens when you have breast cancer told in real time.

Kristen (00:15):
Hi.

Tita (00:16):
Hey, there.

Kristen (00:17):
You look good.

Tita (00:18):
Thank you.

Kristen (00:20):
So today you had an infusion.

Tita (00:24):
I'm still on the same one as before because we had to, and I have to do this again next week because, not by accident, I had to end up, my white blood count was so low that my doctor said we can only do now every other week because I'm taking Zarxio, which is a shot, an injection, but I give it to myself now five days a week, and it's primarily to bring up your white blood count. And it's been working, but my body needs two weeks to recover from every chemo to get the white blood count back up.

Kristen (01:00):
So take me through the white blood count. The last time we talked was just right before Christmas, and so there's a lot that's gone on since then.

Tita (01:09):
Well, so I think for the sake of listeners, I would like to start with telling everybody that everybody's body, how it reacts to stuff is going to be always very different. And the best doctors know how to make recommendations to help you with that. And however, you have to be at certain times your own advocate to say, no, I don't want to do that. I'd like to try something else, but have valid reasons why. So the white blood count issue, just really my white blood count starting to go down and my red blood count was probably the last treatment in December, beginning of January. And my doctor said, that's not uncommon because you have been having chemo and it has been beating your body up. So towards the end of it or towards when you get to this stage, a lot of times your body is just tired of it.

(02:12):
That's how it reacts. You're getting all this immunotherapy and it really needs that help to build back up. So that's when my doctor started putting me on this medication called Zarxio, Z-A-R-X-I-O. And then after a while what was happening was I would have to go back to the infusion center the day after chemo and go there three days a week. And I was just like, can we do something different because this isn't going to work? So I decided to just do it myself and it's been fine. What I did for my red blood count, when that was low, there was a medication that the doctor suggested and then I did a little research and I talked to my nurse and I was just like, this has way too many side effects. It's almost like there isn't a non side effect. And I just said, no, I'm not going to do that. What I would like to do is use my own vitamins, a high potency iron, I'd like to start taking the B12, which will also help with neuropathy. And I started doing that and my red blood count went up, my neuropathy in my fingers decreased, and I didn't even have a lot, but it just decreased.

Kristen (03:26):
It was there.

Tita (03:28):
So the white blood count, the Zarxio and the immunotherapy is definitely helping.

Kristen (03:33):
Good, good. Did your body feel this dumb question, Kristen?

Tita (03:38):
No question.

Kristen (03:38):
Of course your body felt different. I know, but your body's getting broken down like the cancer

Tita (03:44):
Actually, no, no, it's a really valid question. Let me just answer it because I think it is valid. My body didn't feel different to me, but it's not until my white blood count or my red blood count were low that actually I started recognizing, oh, well you know what, hmm, I was a little out of breath and I just didn't pay attention to it. And so what it made me do is say to myself, huh, it has been affecting you. I just didn't know because I've been in an influx of moments when I'm feeling great and then all of a sudden one day I wake up and I feel horrible. And that means just me nauseous. And I can't tell you the last time I took anti nausea medicine, I haven't really needed it.

Kristen (04:34):
That's great.

Tita (04:36):
So that's why your question is very valid because things can happen and I'm not aware.

Kristen (04:42):
Sure. And at least when you get the labs and they tell you, oh hey, your red blood count is low. Oh, there's the explanation. And you're right, everybody's body is different and the doctors set it up with a guideline and then they watch your labs. That's why they look at your labs every time before they give you the bag to see where you are and what your body can handle for sure.

Tita (05:06):
And so now I'm at the phase where I'm getting ready to do a different type of treatment, which will still have chemo, but it will be very, very different. This will be designed to look, my bloodstream, your bones, it's hitting that area because my type of triple negative is also called a micro cell, there's a name for, I have to look it up, but it's micro something disease, microscopic cell disease or something like that.

Kristen (05:35):
So basically I'm putting words in your mouth that kind of more microcellular. I know my oncologist talked about being aggressive with the chemo to get any micro cells that might be floating around, but it's sounding to me like the triple negative has a feature of it of having micro cells that they identify. So they want to hit it hard to get those micro cells.

Tita (05:56):
Well, it has a history of micro cells being dormant in your bloodstream or your bones and coming back a year or two later in another part of your body. So that's why they're doing this to target those areas. And then I'll have to do obviously like a PET scan, but then I have to do another type of scan that's basically for bones and blood.

Kristen (06:21):
Wow. I knew that the triple negative was aggressive in the way that it didn't show the markers that the HER2, the estrogen, the progesterone, so there was not a quick fix. Like my anastrozole is supposed to be the quick fix or the magic pill for estrogen positive. And so with not having any of that with the triple negative, I thought that's what made it so aggressive. But this other microcellular thing is new information that I think is so important to know. And I'm so glad that you're bringing that out because I've known three other people who have had triple negative and you're the first person to mention that they figured that out and are having this kind of treatment.

Tita (07:02):
One of the things that I do like about my doctor is she tells me about the research and she'll share, I had somebody share an article, it wasn't the right time, but it was still a good article nonetheless. But she tells me about the research that's found, when it came about who did it, what does it show. And I have a doctorate, not that this means a lot to maybe anybody else, but I have a doctorate degree. So when somebody speaks research and science, to me, the theoretical part of it, I can relate. That's why you have that DR in the first place. It's not about just telling me about the medicine, but explain to me why you're doing what you're doing and show me the data and the research that supports it. That was very important for me.

Kristen (07:48):
Absolutely. I completely understand, and that's one thing that is really important to mention is that the doctor patient relationship and the doctor being able to meet the patient where she is and how she needs to hear the information, because not everybody would want to know that.

Tita (08:05):
But everybody should ask for clarification and ask for the data that backs up what they are talking about. It's important.

Kristen (08:15):
I agree completely. I think a lot of people just don't, I think the data gets overwhelming and they don't understand it sometimes. But I think it's so important, like you said, to ask those questions so that you understand exactly why. Because a lot of times people do go blindly into it and there are questions that should be asked and advocacy that should happen. So first of all, what does your week normally look like? Because I know that you're having it every other week now, but what does the cycle look like for you for that two weeks now?

Tita (08:48):
Well, the whole two week thing is just what we found in January. So I had back to back treatments and then all of a sudden when I came in, it was like, oh wow, your blood count's really low. We don't think that you can have treatment this week. So it was a disappointment. So I didn't come the next week. So I will say this, and that was two weeks ago when I kind of in the office sort of had a little breakdown, and this is when my doctor came in and showed me a whole nother side of her. And the reason why I was really upset, I was just crying, I wasn't angry or anything, I was just disappointed. I was just sick of this because those two weeks pushed back all my other treatments now into May. And the good thing is it's just one treatment every three weeks. So I do have time in between. It's only four of them, but think about it, that's a lot of a spread. So it is what it is. I have this damn disease, I'm going to have to just flow with it. But here's what she did when she saw me and I was sitting in the room, I closed up my hole where you do your chemo thing, and I went into an office and she asked them to tell me, come there because she wanted to talk to me.

(10:05):
And I was sitting there and it was obvious that I had been crying or maybe I was. And she said, oh God, Tita, you're crying. And I said, this is just mentally now wearing me out. It's not even really the physical, it's mentally just messing with me.

Kristen (10:23):
Beat down.

Tita (10:24):
And I said, everybody sees me as being strong, my attitude is positive, optimistic, I'm still working almost five days a week, sometimes on the weekends just to get things done. And I said, but I don't feel strong. So then she started just talking to me about my son and my grandson, and she asked me for a picture. And then she started being empathetic, which is something that our doctors have to learn how to turn on empathy when it's needed and stop being science-based. And that moment when she did that, it changed everything for me when I walked out the door.

Kristen (11:06):
Oh good.

Tita (11:06):
She said, it's not you Tita, it's just cancer. It just does what it's going to do, but I'm giving you everything possible so that you never ever have to deal with this again in your life, God willing. And that's wonderful for somebody to hear.

Kristen (11:22):
Absolutely. My term, I just felt emotionally beat down. My body didn't feel great, but I just felt like, oh, it just keeps going on. And I remember my doctor saying, Kristen, you have stage three cancer. I am trying to cure your cancer. I'm not just trying to prolong your life. I'm trying to cure your cancer. And I was like, oh, okay. I remember that, and I just remember just feeling like, oh, this is never going to be over. And I know you know it be over, but it does end and it does get better.

Tita (11:57):
My situation was, let me just preface this really quickly so folks will know, my situation around the scheduling started in December and I talked about that where they didn't give me the schedule. So I assumed that my treatments were going to stop at a certain point and then to find out, oh no, you have two more months of treatment. So that played into how I was feeling a couple of weeks ago. So it wasn't just that one time and all of a sudden I had a meltdown. It was, here we go again. Now I know the schedule, but it keeps changing every two weeks. So yeah,

Kristen (12:39):
I lost my mind when they postponed it one week and so I can't imagine, but where's your happy place in this? I think I know. I think it has to do with your family, but

Tita (12:50):
Well, no, my happy place is just gratitude. The fact that I don't have any other underlying health issues so I can get up every day and still fight this shit. I can get up every day and I can still work and do work that brings me joy. And sometimes it's mad stressful, and my boss and I are always on the same place and he's annoyed and needs to vent. He comes to me when I'm annoyed and I need to go to him. And we agree, it's the same, it's the same thing. I have an amazing little doggy who I love and he's adores me, family, I have a kid, I have a grandson that I'm having a relationship now with because before it was Covid when he was born and I couldn't really see him for two years of his life, his first two years.

(13:42):
My sorority is always providing me love and care, extended family. So I'm blessed with all of those things. But more importantly, my faith and just the gratitude for all of that is my happy spot. Because when I'm down and out, I'm like, I can look outside in downtown Long Beach and see people that are probably half my age that are just not mentally well, don't have any food security or any other things like that. And they might be cancer free, but when I look at what's surrounds them, I feel a lot of empathy for them, not anything else unless they're violent and I still want them to get help. But I just say to myself, I have so much, I have a phenomenal apartment. I can buy what I want anytime or I could buy what I need anytime, what I want, not always, but what I need, what I need every day I can do.

Kristen (14:45):
Well, and if Eva was here, she'd be calling you Pollyanna. That's what she would call me. Okay, Pollyanna, and I'm like, no, but you just really got to like, I am grateful for this life and that I have the emotional tools and that I have the people around me and that I have the health. And people say, how do you think you have health? You have cancer. And I'm like, if I didn't have a healthy body before, there's no way my body would make it through this. But yeah, I love the gratitude. So when you are having a hard time, it's that gratitude, you can just go to that and pull that through. I know I make a gratitude list when I have a pity party. I don't have 'em very often.

Tita (15:25):
Me neither.

Kristen (15:26):
But I'll make a gratitude list.

Tita (15:29):
You're talking about the pity party. But here is the thing, when you are feeling down and you're just not having a good day, call somebody and let them know, I'm just having a really shitty day today with this, and I know it's not going to always be like this. Or if somebody calls you that you're close to and they say, how you feeling today, whatever, be honest about it. My mental is a little low today. My energy is just kind of low. And let them help you through that.

Kristen (16:04):
Super important, super important because I know we talked about this early on, but I remember not feeling comfortable doing that with many people because I felt like I had to take care of their feelings about my cancer.

Tita (16:19):
Managing their expectations.

Kristen (16:21):
And so it took me a while and then I really was just like, okay, I can't. But being able to feel your emotions and be in that place when you have those feelings in a safe environment with people who love you and just are there is so important, so important. So what is your favorite lift for health? I call it a lift, just to make yourself feel better. When you're not feeling well, what's your go-to? Is it hydration? Is it B12? Is it,

Tita (16:50):
It's always a lot of water no matter what. And I take the B12 now every other day. I take the vitamin every day, and I don't like the taste of beets, but I have a be root chewy that I take two of them, and they've been amazingly helpful. I would say sleep, I'll just allow myself or I'll read and allow myself to just get some sleep. I took a nap today when I came back from chemo. That's not the usual, but after two weeks of not having it, the Taxol kind of kicked my butt.

Kristen (17:23):
Sure. Well, and like me, you're single and you're doing this on your own. Do you find there are any challenges?

Tita (17:32):
Well, I'm alone, but I don't necessarily feel lonely, but every now and then I do. But there are people that live with someone or several and feel lonely on a regular basis. So I would rather be alone and deal with that feeling of loneliness and know I have people I can turn to that will come over, stay with me. I have people around the country that are like, Hey, can you come here and stay? And I'm like, well, I don't want to change all my hospital, my medical stuff around, but thank you. But I have that option. But I would hate it if I was with somebody who I could not just turn to on a dime and just say, Hey, I feel like shit today, and they're going to draw a bath for me. Or there are some people that are living with this shit with somebody who doesn't care about them.

Kristen (18:28):
Absolutely. So is there anything that you've been shocked about through this process so far? I don't see you getting shocked, but I mean surprised about?

Tita (18:38):
Yeah, and it's something that my doctor said to me, and it was a really aha moment, and it's so simplistic, is that it's cancer in your body reacts to it at times the way that it wants to. It is shocking that this could lay dormant. I could have a mastectomy, and just so everybody knows, I did get news that it has not metastasized, meaning spread throughout my breasts or my lymph nodes. And the lump that I had initially seen, you can't even feel it anymore. So it went down half a size, but it's still cancer and it's still there. So I, I'm going to have a mastectomy. But what was shocking was that I have this microcell disease or microscopic, I think it's called microscopic, I don't remember, but it's a micro something disease. And that for some women, it has been shown many women that it comes back over time, whether it be a year or two years, five years in a whole nother part of your body.

(19:42):
It's been laying dormant in your bloodstream. That was shocking to me that after you go through all of this, you take these off, you ring the bell, you're just like, yes, your hair comes back, you're feeling better. You're like, oh, I'm going to take such good care of myself now. Ahat has nothing to do there are some women that take amazing care of themselves, athletes and everything that cancer, they get cancer. But that's the shocking thing for me, that particularly with what I have, if we did everything the traditional way before this research was found and all this other stuff, it could come back.

Kristen (20:23):
I remember thinking also, you know what, if I do this, this, this, and this, then this is the outcome, right? You've been told right in school and as an instructor, as a teacher, like you say, you do these things and here is your outcome.And you can do all of these things and you can still not have the outcome that you want. And that pisses me. It's like you can try as hard as you can do all the things, and it's not a predictable thing. And my surgeon, Dr. Rivera, when I went in, I said, so I'm cured, you know to my, and he said, you're cancer free until you're not. And he's a cancer survivor, so he could say it. If anybody else said that to me, I probably would've punched him. But he said, you're cancer free until you're not. And that's shocking. That is shocking. And I think that's what you're talking about is that it can come back like that.

Tita (21:27):
Well, also too, and you can attest to this probably even before your doctor said that, but I'm on a support group as well out here in Southern California, and one of the things that they talked about last Tuesday was that, and there's several people that are already survivors that are on there, the host is a survivor, and then others, we come on and just kind of talk about our journey. But they said, all said that no matter what, they always, if something else happens in their body, they get a pain somewhere, something is going on, there's a part of them that thinks, oh God, I hope it's not cancer. So there's always that in the back of your mind.

Kristen (22:10):
Yep. I have a couple little cysts on my wrist, and the doctor wanted to do an MRI on my neck and on my wrist. And so I had the MRIs done, and the first thing I look for is no metastasis. That's the first thing that I scan for. And that's not what they were looking for, but you always hear the stories of, oh, I was there for something else and they found, right? And so they say they're scanxiety and it's not just like you go for, I don't have a yearly scan, but when I do get a scan, it's a scanxiety.

Tita (22:44):
Yes, it's scanxiety.

Kristen (22:46):
And you wait and thank goodness they understand that you are nervous and they let you know ASAP.

Tita (22:52):
Yes.

Kristen (22:54):
How much longer until you do the next type of chemo?

Tita (22:57):
Well, next week. So I had to even talk to them again today about this because I'm going to go and have blood work done on Friday just to make sure my white blood count isn't low. Cuz if it is, then I can't come Monday. So it's going to push it back again and it's going to do the two week thing for my last treatment of what I've been doing, the Taxol and all the other stuff, because I'm not doing just tax all. I have some other stuff too that I have to do because it's triple negative.

Kristen (23:26):
Okay. Do you have any final thoughts, any final nuggets for me?

Tita (23:33):
I think I've put my nuggets kind of in there, and I suggest to everybody that they get invitae, I-N-V-I-T-A-E, I don't have to go there, but they do the scan DNA scan thing.

(23:48):
And the reason why is mine came back great. I don't have anything that they're showing in my body that says, oh, you have this cell that's laying there, or this gene, not cell, gene, and because of this gene, you probably should get checked for this, this, and this. So I don't have any, which was great news, but I think that's something that everyone should do, is to get some sort of gene test to find out if you have something that's inherent that's just been laying there, or maybe not inherent, but it's there for whatever reason.

Kristen (24:23):
Yeah, I remember they did, I don't know if it was that one, but they tested for 80 different types of cancer and none of them came up as in my genes. None of it was genetic.

Tita (24:33):
But the thing that this one, they just look at everything. It could be any other type of gene, diabetes, all these other things, but it was part of my healthcare and my doctor wanted me to have that.

Kristen (24:49):
That's fantastic. In case you haven't looked, you probably know all about it, there's an organization up there in Santa Monica called Pink Lotus and a Dr. Christie Funk, I think she was the one who helped Cheryl Crow with her cancer. She has all kinds of really great plant-based recipes and all kinds of power smoothies and things like that. Anyhow, she keeps up on the research, that's what it is. And Pink Lotus is a beautiful organization up there, and so she's done a lot of the research on how good plant-based is for breast cancer, specifically, all cancers and living, but just all kinds of good stuff there in case you need it. So anyway, it's good to see you.

Tita (25:34):
You too.

Kristen (25:35):
I love you, and it's so good to see you, and I'm so proud of you.

Tita (25:40):
Thank you. Thank you. Love you too. That's definitely, and this is a good thing, a good avenue that you're opening up for people. And I do hope that you have cancer, period, when you have breast cancer, then you have this commonality and resource. You do really hear many things that will resonate with you, like you didn't think before, like having your genes doing your gene testings, and so that you might prevent something else that's just laying dormant. And then you go and you check your kids like, whoa, my child could possibly have this or something. So these kinds of things to pass on are really good nuggets, and so I appreciate you having this platform.

Kristen (26:22):
Well, I appreciate you being here and opening yourself up because I can ask questions and I can talk all day. But hearing you and another perspective and people relating to you and your journey is so important. And I just so admire your outlook and your resilience and your honesty.

Tita (26:41):
Thank you, thank you.

Kristen (26:41):
I so cherish it.

Eva (26:44):
Oh, appreciate you.

Kristen (26:44):
I love you.

Tita (26:45):
Love you too, honey.

Eva (26:48):
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Kristen (27:03):
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Eva (27:18):
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Kristen (27:27):
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Kristen (27:47):
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Eva (27:52):
Thanks for listening to Breast Cancer Stories. If you're facing a breast cancer diagnosis and you want to tell your story on the podcast, send an email to hello@theaxis.io. I'm Eva Sheie, your host and executive producer. Production support for the show comes from Mary Ellen Clarkson, and our engineer is Daniel Croeser. Breast Cancer Stories is a production of The Axis, theaxis.io.