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

Kristen (00:16):
Well, hi.

Tita (00:17):
Hey, Kristen.

Kristen (00:18):
I don't even want to ask how are you and how your week has been because it's crazy, but that's why we're here. And so remind us what you know about your cancer at this point.

Tita (00:30):
I know that I'm stage two. I found a lump myself, and that's a whole nother story about how I feel about healthcare and what they could be doing differently. And so my chemo is I'm a triple negative, which means that the markers that they usually use to determine the type of chemo that you're going to receive is three different ones. And usually they show up to tell the doctor what type of treatment you're going to get. So mine doesn't show up at all. So it's triple negative, which means that the chemo that I have to get or receive will be, they call it aggressive. I wish they changed that name to something else cuz that sounds so, it makes even having cancer sound even more tragic. But I get what they mean so I get what they mean by it now that I have my whole schedule and everything set up and I understand it better.

Kristen (01:27):
So with the triple negative, what that basically means is there's not a hormonal type treatment they can give. So for people who have been listening throughout our previous seasons, mine was estrogen positive, progesterone negative, HER2 negative. Natasha, who I know you'll meet someday soon, Tita, you'll love her, hers was HER2 positive and the rest was negative. And so they like to have one of those to be able to target chemo toward, to have some kind of endocrine therapy for.

Tita (02:01):
Exactly.

Kristen (02:02):
And so with the triple negative, it makes it hard. And so instead of saying this is harder to treat, they call it aggressive.

Tita (02:09):
They say it's aggressive treatment. Yeah.

Kristen (02:11):
Because it's not just very targeted and easy if you can say easy.

Tita (02:15):
Well, the good thing about it though is when she first said that, so I said, so is this a rare form of cancer or something that I have breast cancer? She said, no, it's not. It's actually a triple negative is not uncommon. She said, it just has to be treated differently. So that put me at ease. And then I met several women recently who have, because I've been sharing everything with friends and family that they have been putting me in touch with people who have, are survivors and were triple negative. So it was kind of nice just not feeling like, oh my gosh, I'm the only one that has this triple negative thing in the whole world.

Kristen (02:56):
Yeah, exactly. And to your point, I know two people who were diagnosed 10 plus years ago with triple negative and they're doing great. Not to say it's easy. None of this shit is easy.

Tita (03:08):
No, no.

Kristen (03:09):
So I was writing show notes and all I could do is write, wow, what a week? And I wanted to write what a fucking week, but what a week? And you have a smile on your face and I just like Tita, I can't help but tell you, that's like 90% of the battle is keeping that smile, because all of this is, it's nice to have a plan, but it's not a plan that you've gone through before.

Tita (03:36):
You know what? I'll be very realistic about my behavior or my attitude and my smile. I don't take this for granted. I don't take it like it is not something that's extremely serious, but I have so much to be grateful for that I'm not going to let fucking cancer rule out every other thing that I have that's going on. All the other people that constantly check in with me and are really concerned. And at one point, the weekend right before chemo, one of my good friends, she flew in, I think it was that Thursday or that Friday, that Friday, she surprised me and she stayed until Wednesday. She was just nervous, but I had to tell her at one point, stop asking me every two minutes how I'm feeling, how I'm feeling. I haven't even had chemo yet, so I don't feel any different. And I said, what's happening right now is you all that care and love me, you love me very much, and this is devastating for you.

(04:37):
So I have to now manage your feelings. And that is becoming overwhelming. And then she was like, oh, first she said, well, it's because we love you so much. And I said, listen again to what I'm saying, I am managing your feelings. And that on top of what I am trying to do for myself is too much. And she was just like, oh shit. You're right. I get it. I will stop. And I said, so I want you to care about me and ask how I'm doing because that's real. I said, but don't ask about it because you are so stressed that you want me to say something to help you manage your stress. Let's not do that. Let's talk about something else I'm grateful for. Let's talk about some of the other things, I'm glad you got home, tell me about what's going on with you so that you can give me other things to focus on as well. So my dog does, my dog, all he cares about is am I going to go out for my walks? Are you going to still take me to doggy park? I'm hungry now, and where's my greenie first thing in the morning? That's, you know what I mean?

Kristen (05:47):
Yeah. Well, and I think a dog is the most important actually, because they don't know any different. All they know is the unconditional love, and they still need you to act normal. They have that expectation of you acting normal even when maybe you don't have that expectation, right? Or I don't have that expectation. I am so glad that you were able to have that conversation with your friend because that's something that I feel like as women, especially in caretakers, we are always trying to be sure that other people feel okay. And I am so glad that you got the memo early and put those things together because I didn't. And a lot of people don't, and it's so important for people to understand they can care about you and also not make it your responsibility. And I found that also when people would say, what do you need? I can tell you what I need, but I can't find a purpose for you in this. Does that make sense?

Tita (06:55):
Absolutely.

Kristen (06:56):
People are afraid, they're afraid for you, and it's someone who's very close to them. So it becomes a lot more real. All of it's done out of love.

Tita (07:05):
Yeah, absolutely. And I mean, do you need anything? I mean, my chief, I work in human resources, and I have a boss as the director, and then there's the chief who handles all of HR and we're a big organization. And she texted me today and she didn't text me, and she was just like, hello my beautiful friend. It wasn't like formal, it was just straight up like, Hey, I've missed seeing you this week. Because I was working, but there was a meeting that I couldn't attend because it was the same day of my chemo. And so a whole bunch of people were on this meeting and I couldn't be there. So she was just like, yeah, I miss seeing you. And it was just like, yeah, I can relate to that. That made me just smile. And then she said, do you need anything? And I said, I'm good. Because you know what it is, Kristen, that people don't realize, you don't sometimes know what you need until you need it.

Kristen (08:06):
Exactly.

Tita (08:08):
So you know you try to be as prepared as possible. But yeah,

Kristen (08:15):
With that said, that's a great segue into, so six days ago you had your first chemo and we'll talk about, and you're going back tomorrow and we'll talk about that in a little bit too. But can you just take us through what that was like?

Tita (08:30):
I have to say, anything else you go through for the first time, that's probably a major situation. It was surreal the night before. I didn't sleep very well, obviously I was anxious, but I made sure I went to bed early, but I couldn't really sleep that well. So the next day, my friend who was from Atlanta, Natasha, she was like, take you, I'll take you. And I said, no, it's all right. Tiffany has already made plans, took off from work, she's going to take me. And I love Tiffany's energy. Her energy is just very calming. And so we get there and filled out paperwork and stuff like that. And here was one creepy moment though, I remember when I went for an exam and I looked down the hall and I was like, I could see people kind of laying or sitting on top of their heads or something.

(09:26):
And I was like, that's where they get chemo. So I remember that. So now going inside and turning that corner into that place I saw before, it was almost like I could hear my footsteps in my head. It was just, I'm walking in this place now. And then you can pick where you want to sit, either be by the windows or you see some people sort of laying back, sleeping, somebody with them reading a book or something like that. And I said to Tiffany, which should I pick? She was like, here, how about right here? So we sat by the window and it was a beautiful view, and I love clouds, so the clouds were just amazing. That made me feel very centered. And I had two bags of stuff with me. I had a bag with all my ice pack stuff that I had a bag with my blanket, even though they give you a really nice heavy blanket.

(10:26):
I had my headset, I had this, I had books, I had everything. And you would think I was going to be there for a week. But Tiffany and I just sat there and we were just talking about a whole bunch of stuff. And then the nurse gave me this packet with all my information in it, and she was talking to me and Tiffany reached for it, and Tiffany read the whole thing through.

Kristen (10:48):
Wow.

Tita (10:49):
And I was really kind of glad about that because she's such a thorough person with anything. So she had a couple of things she asked about and she went over it with me. It wasn't just like, yeah, that's your booklet, you take it. She took it and read it. So I had three different types of medication. Three times I'll have three hours of chemo. So that's this seriously aggressive part.

(11:17):
All the other Mondays, it'll be one hour. And it was Keytruda, Taxol, and Para Platin. And so every two minutes they were changing a bag. It was steroids, it was the chemo, it was the immunotherapy, it was saline, it was to wash because I will say this, that having the port, because we didn't talk about when I had the port put in, Tiffany went with me I think for that. That was, it like a painful situation or anything, I think the biopsies were more painful than even the port. That was just the guy did it, and I was like, Hey, when is it supposed to be, you know hurt a little bit? He was like, oh, I'm finished. I'm sewing you up already. And I was saying the doctor was funny. And I was like, okay. But the whole situation is surreal. And then you're feeling these things in your body, and I think it's really important to bring somebody with you who is concerned but not afraid. If that's possible, bring somebody with you that's just very even keel that you can really talk about things, but they're really concerned about it. So they take your booklet or they'll take whatever and say, Hey, can I read this, I want to just see what it is. That you need, because even if you are one of those people that are thorough and pay attention to everything, when you're in those moments, sometimes you just really can't.

Kristen (12:51):
It's kind of like your amygdala is firing.

Tita (12:53):
Absolutely.

Kristen (12:54):
Because it's all new and you are in a new situation, you're in a new surroundings. It's like in a new school year as a kid, you can't possibly think of what's going on in class, cuz you're worried about all the stuff.

Tita (13:07):
Well, they're talking to you, they have to take your right and they have to take your blood because they have to check your vitals first before they administer anything. So you have blood work that's going to happen and they have to come back and tell you about the blood work and make sure everything is okay to move forward. So there's all these things going on. So when you're handed a booklet, it's like, when am I going to do this shit? And then I was given 50 milligrams of Benadryl.

Kristen (13:40):
Oh my goodness.

Tita (13:41):
It's like enough to put a horse to sleep. So of course I did pass out, and when I woke back up again, Tiffany was back. She had left and came back. But I was definitely a little out of it. We went and got food and came back and ate, talked a little bit more. But yeah, I was definitely out of it.

Kristen (14:05):
So I have a couple of questions with that. So I'm guessing the Taxol is what you're going to be getting weekly, is that right?

Tita (14:13):
So no, Taxol given on day one, eight and 15.

Kristen (14:19):
So you have three of Taxol. That's the one that made me itch. I think that's why they gave you all the Benadryl. So did you have any of that itching?

Tita (14:30):
No. And I thought about you too. I was like, and I told my friend Tiff, well, her name is Tiffany, but we call her Tiff, and I told her about it. I said, so somebody I talked to said that they started having itchy feelings from some of this medicine. And she said, oh, really? And I said, yeah, itchy. And she was like, Ohhh. So for some odd reason in my sleep or something, I seem to be getting busy, you might know why, because my shit is just really itching from the,

Kristen (15:04):
My shit is itchy.

Tita (15:06):
No, I didn't have any of that. But you know what though? It might be Kristen because the immunotherapy.

Kristen (15:12):
Maybe.

Tita (15:13):
And remember I had the two other drugs too at the same time. I had the Keytruda, which is called Pembro. Pembrolizumab is the correct name, and carboplatin out their cycle situation here. But it seems like the Taxol is the one that I'll be having the most consistently.

Kristen (15:37):
Okay. Yeah. And that's the one, I'm sure they told you all about that, that's the reason you're wearing the gloves and the booties and all that kind of stuff.

Tita (15:44):
No, they didn't talk about the neuropathy at all.

Kristen (15:46):
Oh okay.

Tita (15:46):
It hasn't even come up, but I'm prepared for it because you told me. So I've been bringing stuff, and I will ask about it tomorrow, but I'll say this, going back really quickly, the day of chemo, I didn't really feel that bad. A little bit tired at the end because of the Benadryl and everything, but it was definitely the next day I felt sick. My body felt like I was disoriented. I was a little afraid actually. But what I found, the reason why the first thing I went to was drink down tons of water, drink down tons of electrolytes right now. And as soon as I did that, I drank probably about 40 ounces of water almost immediately. And as soon as I did that, I started feeling better. I started feeling more myself.

Kristen (16:42):
Your body's trying to get rid of it. And the Benadryl, I think we talked about that a little bit too, was drying you out a little. And I think that was the allergy things that you were talking about too. That was the first day you said that that was the hardest part, right?

Tita (16:55):
Yep, yep. For sure. That definitely was a lot. I had the windows open and just did not think about Santa Ana winds and how it was going to affect me with everything else going on. But yeah, that next day was devastating. My neighbors had to walk my dog the whole day for me.

Kristen (17:14):
And so you were able to get some sleep that night?

Tita (17:18):
I slept that night, but I don't know if I slept well, but I was so drug induced.

Kristen (17:26):
Yeah. With the Benadryl and all of that. And so I'm really glad that you got the hydration that you needed. And I had to think of it as my body's trying to get this poison out as fast as possible, and it's going to do everything it can. And I think that's why people get nauseous too, because your body just wants this out. It's not normal. And so once you feel like you got hydrated and you were taking the nausea medication too, right?

Tita (17:52):
Yeah. And I remember you saying, texting me and saying, stay on top of the nausea. And I was like, oh, yeah, that's right, so I'm going to do this. One thing I will recommend to people is I didn't have to take the nausea medicine all the time to be honest with you. By Wednesday I was okay. But what I did realize though is from two to three days of taking it, I was constipated. And now when I get constipated, this has been, even when I was a child, I get a fever, I get sick. So I started feeling like, what is this? And my temperature was going up a little, nothing to be alarmed about, but I was like, ah. So Wednesday I pulled out some slim tea and I made that, and I drank half of it, so not to scare my body too much already. And it was by Thursday morning, I had a regular bowel movement. So now what I do is I make the tea, I keep it in a cup, and I'll just drink little sips of it here and there. And if I'm taking the nausea medicine, if I'm feeling nauseous and I start taking that, then I'll drink it a little bit more. Because for me, being constipated is just as bad, growing up as just being sick from, yeah.

Kristen (19:10):
Yeah. And would you say that the second day for you was the hardest as far as the way that you felt physically?

Tita (19:16):
Oh, with a hundred percent. Outside of, and I thought it was horrible having to have two biopsies done the same week of the first time, you're having full fledged chemo, three different chemo sets. That was a lot because it was on each boob. And so I have a little minor surgery on each boob.

Kristen (19:34):
On each one. Oh, okay, so that's what we were going to come back to.

Tita (19:39):
The reason why they wanted, my doctor wanted to have, not only my doctor, my oncology doctor, but also the surgeon, wanted to just have these biopsies done and as early as possible to just see what's kind of going on to make sure that there's no spreading, or at least what the MRI found is still consistent. And to see if it's benign or malignant, it might not even be malignant. So they wanted to do it right away.

Kristen (20:10):
And I feel like also they're going to want to do an MRI again, and they're going to want to see diagnostically, what are these, is the chemo working and what's the next step on it?

Tita (20:22):
And my doctor said that. She's like, yeah, I'll be checking consistently.

Kristen (20:28):
I was thinking it was two biopsies, one boob. That's what I was going to name the episode. No, I'm kidding.

Tita (20:33):
My goodness.

Kristen (20:34):
It was two biopsies, two boobs.

Tita (20:36):
Yeah. Call me two tits.

Kristen (20:38):
Well, and so Monday you've got chemo, Tuesday you're feeling like ass, and Wednesday you're getting poked and extracted from your body.

Tita (20:49):
Two little minor surgeries, yeah. Because it's not stitches, but they have to cover it and make sure that you don't, so yeah, it's definitely a thing.

Kristen (21:00):
Yeah. So you had to keep icing it. And I think that, I'm sure you thought I was a big weirdo. I was asking early on, do you sleep on your back or your side? And what a gift that you sleep on your back. Because when two boobs, two biopsies, no sides.

Tita (21:15):
You are not sleeping on your stomach. The sides, the stomach is out.

Kristen (21:19):
No, thank you. Oh my gosh. So we talked physically about what was going on. How did you feel emotionally about the week? Did you feel like you just stayed level and just managed, let yourself manage it?

Tita (21:36):
So I think for me, emotionally every day is different, but honestly, I have so much to be grateful for. I mean, recently, what am I talking about recently, today I get an email from my biological niece, and she and I had been estranged for a little bit, but she was like my child growing up, as my brother's daughter. And so she emailed me today and was like, first of all, she still calls me auntie, which I love. And she's like, Hey, auntie, I just wanted you to know that on September 15th, I had a little daughter. And she said, I know things have not been right between us, but if you would like to, I would love, I forget how she said it, but it was more or less like, not making it about her, but making it about, if you'd like to get to know her, I just want to let you know about her and here's her name and all that. And so it was just like things like that, when that happens, that was like, I mean, all I did was I talked to my mom all day. I was like, oh, mom, you would've loved this. You have a great grandchild and I'm going to get to know her and see her. And so it was just like the, I cried tears of just absolutely.

Kristen (22:59):
Oh, that's amazing

Tita (23:00):
Joy. So it was just beautiful.

Kristen (23:04):
How beautiful. Yeah, what a gift.

Tita (23:06):
Yeah. And I've always prayed that she would come around and we could just put whatever happened behind us and just look to the future. And it did.

Kristen (23:16):
That's incredible.

Tita (23:17):
And it did.

Kristen (23:17):
I love it. Yay. A new little grand niece.

Tita (23:22):
Yes. And I love babies. Oh my God I love babies. So this is going to be, as soon as I kick this bullshit, I'm going to head to Boston. Oh, you want to know what's so funny? I know you're five minutes to go. My landlord and his wife, he was diagnosed with cancer last year, and they had new baby. I feel so bad for him, like brand new baby, and he cancer. And they're young, they're a young couple. And so when I told them that I was diagnosed with breast cancer, so they're always checking in and he's like, Hey, how's this going? And how's that going? So all of a sudden, yesterday, this is funny as hell, one of my best friends was over hanging out and something was at the door for the mail. And she was like, oh, here. And I was like, what the hell is this?

(24:08):
And it was like clinging, cling, and I was like. So when she left, I ended up opening it and I opened up this box and there's a bell, and I was just like, what the fuck did he send me a bell for? And so my landlord sent it, right? So I called her and I said, Ellen, he sent me a fricking bell. What is this to sound, to tell Toby I need some water? And she said, no, you dummy, it's a significance of when you get being cancer free or being, yeah. She said, so that's what the bell is for. And I was like, oh. I was like, what the hell did they send me a bell for?

Kristen (24:49):
I'll send you something, but I had to know the significance, I'm a nerd, of the bell because in a lot of the treatment centers, they have bells, and you hear of people ringing bells. And it actually, if I remember correctly, it actually originated with the military, and it was the completion of a job well done. But he knew how significant the bell was. So I think that's amazing that you have your own bell.

Tita (25:12):
Yeah, that was really sweet that he sent it. And he didn't, he hasn't heard one in the clinic that he goes, he's with Cedar Sinai, I'm at UCLA. He said, maybe not, because maybe some people are not coming out of it.

Kristen (25:26):
Well, and I remember when I rang the bell, I had a little bit of completion guilt, because I remember one of the first or second chemos, I heard somebody ringing the bell, and I was like, I hope I get to do that. And I remember crying and being a little sad and all of that. And so I think that there might be some different reverences around some of that. So tomorrow you have your second chemo, and so what does that look like?

Tita (25:56):
My best friend who's known me since I was 17 is going to pick me up in the morning, and her wife made some soup for me. So I'll have some soup, and I'm sure it's a nice big old thing of soup. And we'll go over there and she'll hang out with me, bring me back home, and then we'll see how I feel after an hour. This is now new to me as well, so I'm just taking it all in and deal with my somewhat sore boobs. Somewhat sore, they're really not that bad anymore, I'm just being a drama queen, cuz I was just bad because I had to have two.

Kristen (26:34):
You could do that all you want, you get to. Now, I know it's not the four hours, and I know that it's Taxol, so what would you do differently if you were going to do something differently from last week?

Tita (26:46):
I don't think anything. Home is good. I can walk my dog in the morning. I can probably walk him in the afternoon, see how I feel. If I can't, I'll ask my neighbor to walk him. I don't think I'm going to do anything different. I'm going to keep my expectations kind of very low and just sort of figure out how does this, now how does this day this journey with it feel? Am I going to have an itchy bush like Kristen? Am I going to feel tingly in my hand? It's just kind of like, what?

Kristen (27:22):
Yeah. Yeah. And we're going to get a little more hydrated.

Tita (27:26):
Well, the thing is that I drink a lot of water anyway.

Kristen (27:30):
Okay.

Tita (27:31):
So that's very easy for me. I drink 40 ounces just in the morning. But what I am going to do, so this I think is one of the things I will do differently, is I will have more electrolytes mixed in with that.

Kristen (27:45):
Well, you look great.

Tita (27:47):
Thank you.

Kristen (27:48):
And your smile is beautiful as usual.

Tita (27:51):
Thank you.

Kristen (27:52):
And so we'll check in. I am so honored that you're sharing with me and that you trust me, and please let me know anything that you need along the way. I am absolutely here for you.

Tita (28:03):
Appreciate you. Thank you, Kristen.

Eva (28:07):
Thank you for listening to Breast Cancer Stories, to continue telling this story and helping others, we need your help. All podcasts require resources, and we have a team of people who produce it, there's costs involved, and it takes time.

Kristen (28:22):
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Eva (28:36):
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Kristen (28:45):
You'll get notes and thoughts from me related to each episode, and links to the most useful resources for all the breast cancer things. So if you have chemo brain, you'll be able to just go read your email, find anything we talked about on the podcast without having to remember it.

Eva (29:00):
The link to sign up is in your show notes and on the newsletter page at breastcancerstoriespodcast.com.

Kristen (29:06):
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Eva (29:10):
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