Day 178: I’ll Be Replacing My Breasts With Tattoos [Dr. Tita Gray]

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

Kristen (00:16):
It's been two months today and two months in chemo years is a long time. And that's where we are.

Tita (00:25):
And they had to postpone my last one, but I told them I don't want it postponed by a week. I said a couple days. So they put me back on Zarxio, which is the immunotherapy, which works better than the stuff that they put me on prior, which is the reason why my immune, when I went to go have my regular March 25th, went to go have chemo, they couldn't because my immune system, the things levels were too low. And I was just so upset and I just said, Zarxio was working really well. You put me on something else that isn't working well, I don't know why you changed it. So they were like, okay, fine, then let's see if we can do two days of Zarxio. So mind you, it was supposed to be on Monday the 25th. So my doctor said, how about if we just postpone it till Thursday?

(01:16):
And what we'll do is we'll do Zarxio Monday, Tuesday, and then Wednesday we'll check your blood levels again and see if everything's good. It was by that Wednesday, it was ridiculously perfect. And I was just like, so yes, Zarxio works not this other crap that you put me on. So the Zarxio got me back to where I should be. And so after my chemo treatment last Thursday, I did Zarxio for five days in a row and I definitely, the nausea is still there. It's horrible, like yesterday, for the first time in a long time, I actually regurgitated. I woke up in the morning and I was like, why do I feel weird? And I was like, oh, I'm gonna throw up. So nothing really came out. So what it told me is that even though my taste buds are horrible right now, my sense of smell is I don't even want to smell anything.

Kristen (02:22):
Crazy, right?

Tita (02:24):
Yeah. I had to unplug all the air freshener things in my house because the smell would just make me, and even the bath products, I had to get one that's absolutely bland because the smell just makes me upset. Fortunately, Toby's smell doesn't make me upset.

Kristen (02:44):
Aw, sweetness. I'm sitting there just remembering those feelings and just wanting them to go away. Usually there's something you can take, like a little antacid or a little something and it's permeating your whole body. Your body is reacting cuz it wants that shit out of it. And so it's doing everything it can, whether it's saying, Hey, this all smells like shit, can you do something?

Tita (03:09):
I know it's just that I dropped about 11 pounds overall, 11, 12 pounds, but I make myself eat. The funny thing is that little slimy taste you feeling that you have in your mouth whenever you're feeling like your tummy's upset, I pretty much have that every day, even with the anti-nausea medicine, no matter what. But I've found that I haven't been drinking as much water because at a certain point, the water makes me feel more nauseous, but I make myself drink it no matter what. But the crazy thing is the smells kind of bother me and all of that, but I find if I don't eat, I'm worse. So it's like the acids in my stomach, and I think that's what happened yesterday when I woke up. I didn't really eat much for dinner. So I think that just kind of that emptiness made me sick the next day. But it's crazy.

Kristen (04:11):
What are you eating? What are the things that work for you to eat?

Tita (04:14):
I'm more of a vegetarian vegan. Like today, I might just eat meat because I'm watching the men's Final Four, and I've been craving pastrami, so I feel like a pregnant woman. And so I am going to go to the deli right around here, and I'm going to get myself a real New York style pastrami sandwich. I can't eat pork, but fortunately pastrami is not. But yesterday I had a veggie bowl, brown rice, peppers, ground beef, that's vegan ground beef and some corn, and that was my dinner. Then I had some fruit before I went to bed, some strawberries and some grapes and bananas. So for the most part, I eat well. I try to make sure that I minimize the amount of gluten I put in my body because here's the great thing, AC makes your joints hurt. And so they were telling me to take Claritin because it helps the joints and all that stuff, and it was, but once I started taking the Zarxio, my joints weren't hurting anymore at all. I stopped taking the Claritin.

Kristen (05:22):
Wow.

Tita (05:22):
Because Zarxio really does help even with that. But I realized too that if I eat a lot of carbs, it does bother my joints. That's why a lot of people that have arthritis, they're told, especially if they go to a holistic doctor or somebody who is a little bit more knowledgeable of eastern medicine, they'll tell them, try to minimize the amount of gluten you put in your body because it makes your joints inflame. So I try my hardest, but gluten-free pasta to me still sucks. So if I'm having pasta, I'm eating regular pasta, it is going to be with all the veggies or maybe some sauce.

Kristen (05:59):
Yeah.

Tita (06:02):
So that's what I do right now. I could care less about following protocol as eating. Okay, so you say you're a vegan, well, you shouldn't be doing this and you shouldn't, right. Oh, and that's okay. I like the substitute cheeses. I like almond milk, butter, it's good. I love it. But if I want something and my body is craving it and I'm dealing with fucking cancer, I'm going to get what I want.

Kristen (06:27):
Two gazillion percent. And if I'm correct, your doctors, if you say, what should I be eating? They say right now all that goes out the window. There are supplements. I was gaining weight because I was eating ice cream because that's the only thing that settled. believe it or not, with dairy, you wouldn't think so.

Tita (06:48):
And the sugar unfortunately.

Kristen (06:50):
And the sugar.

Tita (06:51):
I have to every now and then have dessert or some cereal, I'll have some gluten-free cereal, but it is just what makes me feel better.

Kristen (07:01):
That's basically it. I mean, aside from some supplements that they say, Hey, don't do that, but the doctors are just like, whatever gets you through. And also if, like when I was gaining weight, they were cool and I'm like, no, no, I just worked to get this off. And they are excited to see that. And when you are losing weight, they are concerned. And so I was really curious what you were eating, because I know cold was key for me because my esophagus and all of my digestive tract was burning.

Tita (07:34):
Oh, wow.

Kristen (07:34):
And have they told you why your digestive tract is messed up?

Tita (07:39):
Mine isn't messed up. The immunotherapy has been, it helps with all of that stuff.

Kristen (07:45):
That is brilliant.

Tita (07:47):
The only thing that I really suffer from is nausea. And prior to going back to the Zarxio, my joints were hurt a little bit, especially my knees, cuz they're just kind of beat up anyway, but the immunotherapy really does alleviate a lot.

Kristen (08:05):
That is incredible because I took Claritin for the whole time. Are you done with the AC? Are you close?

Tita (08:12):
April 18th.

Kristen (08:13):
Okay. Okay, so one more.

Tita (08:16):
Yeah, it would've been April 15th, which was my birthday, which is my birthday. But because they postponed it from March 25th to March 28th, I have to move it now a month later from April 15th to April 18th, and that's my last one.

Kristen (08:31):
And so I don't even want to say what's next because this has been such a journey, but what's going on after April 18th?

Tita (08:40):
Well, okay, so let me even take a step back to just March. I had another MRI and everything looks good. The what you call it, the tumor is still there, of course, but it's small. Hasn't been removed yet, and it's reduced completely. They didn't see anything else. But on April 10th, I have a full PET scan and I already met with my surgeon again and my surgeon, we talked and she looked at everything and she said, so I want to go and look at your lymph node, do a biopsy again. I want to just make sure that it is benign, and so I'm going to do that. And then we are scheduling, I talked to her scheduler this week coming up about the date. We're looking at maybe May 20th for surgery, and I'm going to have a double mastectomy. I was like, just take, take them. I'm good.

Kristen (09:39):
Yeah. Yeah. And where is that? Is that UCLA? Is that right by your house?

Tita (09:43):
UCLA, yep. Not far. And I'm already, once we get a firm date and all that, then I'll start making some plans on, I'll probably put Toby in doggy day camp for about five days, and that way I don't have to worry about walking him because the pulling and stuff like that, I can't do. I have a friend that lives in my building that's a nurse that lives in the condo building, and so what I'm going to do is if she's going to be around, I'm going to make plans with her to help me wash because as a former nurse, she could care less about body parts and all that.

Kristen (10:18):
Sure, yeah.

Tita (10:19):
She'll just help me with that, cuz I can't get my upper body wet and I'm going to order one of those food delivery things, so they bring food for a week, you order what you want. That way I can just put it in the microwave and I'll be good. So that's kind of how I'm going to prepare for my surgery. She said that there shouldn't be a lot of pain. She was saying that the pain isn't so much with that surgery. It's discomfort, but you can use over the counter like Tylenol or something. They'll tell you, but she said the pain comes when you're going to have reconstructive.

Kristen (10:57):
Oh, the expanders and all of those things. Yeah. Well, and there's an episode back a couple of years ago that I did with Dana Donofree who owns AnaOno, beautiful company, and a breast cancer survivor and all of that. But the things you need for surgery and now those are the reconstruction things, and so it's like you said, I'm really glad that you said that, that it's a different surgery because of the expanders and all of that. It's still major surgery. They're still going in and they're still taking a body part, and it's a huge surgery. And I applaud you for your self-awareness, your bravery, all the things that you know about yourself to not have the reconstructive surgery.

Tita (11:47):
I will say my doctor, my surgeon, she said, she went on her computer and she said, me show you how your body might look. She said, everybody is different because of their size. So if you are overweight woman or this type of overweight, here's a probability of how you'll look. You might have a little bit of skin here and it could go away with working out. And she said, but if you're thin, this is how it might look. And so she literally showed me all the pictures, all of these, we saw at least 10 pictures of different women, different sizes of the cut because of how their skin healed. She showed me everything and I was still like, yeah, cool. Okay, fine with that. And I might even really pay attention to the fact that there might still be a little bit of fat here, or maybe even a little underneath might be something there. And I'm still cool with it because I've also been looking forward to getting a month after surgery, maybe a few months after surgery, I should say, I'm going to look at getting a tattoo.

Kristen (12:59):
Oh, I love it. What are you thinking?

Tita (13:01):
I love butterflies. So I might get just a really, really beautiful butterfly and maybe a monarch. I have one on my back, it's pretty small, but maybe I'll do that. And then you open your shirt or you can wear see-through type things if you want. You can be very sexy with it.

Kristen (13:23):
Oh yeah.

Tita (13:24):
So that's kind of how it will be something symbolic. It'll be something that will show that I've gone through a metamorphosis. That's the reason why I'm thinking butterfly.

Kristen (13:34):
I love that. Wow. That's so beautiful. I love it. I love it. So gorgeous.

Tita (13:41):
You're so emotional, I love you.

Kristen (13:43):
I know I am. I just feel it. I know I'm such a nerd. I am. I cry, but I really do see it and I really do, my empathic nerve is overactive. I was getting a little teary eyed thinking about it. And can you speak a little bit to the difference in mastectomies now versus 10 years ago versus 15 years ago?

Tita (14:08):
I asked my doctor about that. I said something to her about, you're not going to gut out my whole chest. She's like, no, we stopped doing that. She said, actually, they really stopped doing that in the eighties. She said, unless it was just a doctor who wasn't just a good doctor who just really didn't care. She said, they don't really do that anymore, and now there's more concern of just showing the probability of how you could look. So that's why she did that with me. It becomes more about, and she said, the surgery, you're not going to really be in a, because I said to her, I've been doing a lot of research, it says I'm going to be in a lot of pain. And I said, so I don't know what kind of medication, but I don't like using opioids or anything like that. I'd rather use cannabis.

(14:56):
She's like, no, you shouldn't need anything but Tylenol. You might just have discomfort because you had surgery, so your arms, it's some weird feelings that you might have. She said, but you should not be in any hardcore pain. She said, if you're feeling up to it, you can go home that same day after the surgery. Or if you say for instance, just after surgery, you're still a little too loopy or you don't feel secure enough to go home, then you can stay overnight. And so we went through everything how you lay down. You're obviously going to have to sleep on your back and that the full recovery normally takes about four weeks. She said, some people it's two, but we still say even if it is two and you feel you don't have any pain, really, she's like, you still have to be very careful with the stitches will still be there probably. We went through everything. We talked about everything.

Kristen (16:00):
Did she mention anything about auxiliary biopsy when they're in there with the lymph nodes?

Tita (16:09):
No, they're doing all of that ahead of time just to kind of find out what's going on, how everything is looking. So that's why they're not giving me a date yet for the surgery until they're sure that what's going on with the lymph nodes, because that might change a little bit of the surgery. And it's really just the left lymph node, the left breast.

Kristen (16:29):
Okay, so you sound like you're feeling really confident and really good, and I mean as confident as you can. Sounds like you've done your homework. Knowledge is power.

Tita (16:42):
Absolutely. I mean, this shit is just, I'm going away out of town on business with two of my other colleagues on April 24th, so it'll be six days after that last chemo. The only thing that I'm kind of glad about is that I'll be taking Zarxio that week, so I'll be taking the immunotherapy prior to me going away, and that day that I'll be leaving that morning will be my last shot that I'll give. And so yeah, I'll take my nausea medicine with me. I'm going to probably be a little bit nauseous, but I'm like, you know what? I've been living my life being a little bit nauseous for the last six weeks or eight weeks, and I want to go away. I want to do this trip, and I know me. I know I'll probably go and get some cannabis, take an edible or something that I can take for nausea, particularly and sleep. And what I'll do is the flight is about four and a half hours, so what I'll do is when I get to the airport, I'll just take it in between that time and boarding, it probably hit me and I'll just go to sleep.

Kristen (17:56):
Are you going to Hawaii?

Tita (17:58):
No, no. Going to DC.

Kristen (18:03):
Okay. Cool.

Tita (18:04):
The cool thing is that I'll get to see some of my friends and family in DC.

Kristen (18:09):
I love that.

Tita (18:09):
And they all live in Maryland, but just on the suburbs, they call it the suburbs of DC, so.

Kristen (18:15):
That's great.

Tita (18:16):
I know how to get around by train if I have to, so it's all good.

Kristen (18:21):
Is there a talk of radiation and why or why not?

Tita (18:24):
Okay, it's a good question. My doctor mentioned radiation to me and I told her, I don't want it. I don't want you to just add on shit because of adding it on. That could have me feeling a whole different kind of way, and I want to be, well, yes, and I don't want it to come back, but I would rather be on immunotherapy for a year or something or some other pill I take than to have radiation. But my oncologist did mention it. She hasn't mentioned it since. Now that's the thing, she hasn't, and she's the type, if she feels very strongly about it, she will come back and say it, and she still might, but she would have to give me another really, really good case of why it's needed. If the lump has shrunk and there's no other signs of cancer anywhere else except there and we're moving it, we're removing the whole thing. I don't understand why I need to do radiation.

Kristen (19:35):
Well, the lymph nodes are going to give you information about a radiation as well. It sounds to me like all of the chemo of the treatments have been best case scenario in your biopsies and all of that, and with your tumor shrinking and to being just so much smaller, your body has reacted to the chemos.

Tita (19:59):
Every time they've done other biopsies, they've been benign.

Kristen (20:04):
I love it.

Tita (20:04):
So, that's what we're looking at right now is to make sure, do the PET scan, make sure that nothing is showing anywhere else, laying dormant as best they can. They're not God. So I am clear of that. And then doing this additional biopsy, I'm praying that that comes out benign as well in the lymph node, then there might not be a need for radiation.

Kristen (20:31):
Have they mentioned anything about having a timeframe between the time that chemo is finished and having surgery?

Tita (20:38):
A month.

Kristen (20:39):
One month.

Tita (20:40):
Yeah, it's being proactive, even when you get news. The worst news that I've had is when my treatments have had to be delayed because my red blood count is low or my white blood count is low or something. But what I've just been experienced the last few days has just been, it's funny, I got to take some more anti-nausea medicine in a little while. Here's the one thing I will say for everybody, depending on what medicine you're taking, if you're dealing with nausea, and even though you might feel like, oh, well, it's been enough days, I shouldn't be nauseous anymore, still take your anti-nausea medicine because you just never know when you're just going to wake up and, this shit is still in your stomach, it's still in your body. And that's what I've just kind of been experiencing, like, okay, Tita, yeah, you want to feel like you're a good, but it's still in your system and you're going to still have to deal with this regimen until this stuff is really cleared out.

Kristen (21:47):
I feel like one of the best pieces of advice someone gave me is getting ahead of the pain and getting ahead of the nausea and that there is no award for not taking that pill.

Tita (22:00):
That's me. Stop trying to force being normal because shit isn't normal yet.

Kristen (22:05):
There's nothing fucking normal here.

Tita (22:10):
Yeeah. It's not.

Kristen (22:11):
No, no. And I am so happy that you're getting to the end of this chemo and I know that you don't feel like a million bucks all the time. You look great and your spirit's great. I think it has to do with a lot of the inner work that you do. Can you talk a little bit about that? What do you do to be able to get through this every day?

Tita (22:35):
Well, I still work, and my work that I do is a blessing because it is about making other people better. It's about helping us to have a better organization, and to me, that's my small piece of the pie of making a better world. So the work that I do is positive even though a lot of it I work in diversity, equity, and inclusion, and so right now it's getting this bad rap, but it's all about helping us to be better people. That's really all it is. So that's one thing. Also too, I've been eating what the fuck I want to eat, which is what I was talking about earlier. I'm not drinking. I haven't had alcohol in my system since last August or September. I think I drank one time, some mimosa. I was just like, oh, fuck it. Everybody's having one.

Kristen (23:27):
Mimosa's not going to kill you.

Tita (23:29):
Yeah, right. This is not going to make my white blood or red blood cells drop or anything. And I might have one on April 13th getting together with some friends, like some of my closest friends and one of my closest work friends and celebrate my birthday weekend. My birthday's on the 15th, and so we're going to go to a seafood place and I'm going to get a boil with some king crab legs and some shrimp and corn, and who knows, I might even just have a beer to go with it. And also too spiritually, it's Ramadan, so I can't fast because of my illness, but I've been making donations. I read with a group from around the country. We read the Quran every night and we all just take turns reading. We do it the next day. It is from 5:30 to 6:30 for me. And that's kind of a good way to just kind of get some positive reinforcement.

Kristen (24:28):
Connection.

Tita (24:28):
Spiritually, and I haven't been doing my prayers, I shouldn't say a normal Muslim, but I haven't been doing them in the traditional sense at all. But I do what I need to do to keep my positive relationship with God and just ask for help, ask for support. My dog is an amazing, I realized he's nine years old on April 27th, and he's the longest relationship I've ever been in.

Kristen (25:03):
That sounds like me and my dog except for my son.

Tita (25:06):
And that's another thing too, is my godson and little grandson, when I get to see them, it brings me so much joy, and when somebody sends me a video and my grandson is like, hi, grandma, I love you. And that joy is just amazing. I wish I could see him more, but last time I saw him, I got a cold, and that cold was almost flu-like, so it almost put me under.

Kristen (25:36):
Ridiculous, right?

Tita (25:37):
So I was like, I love him and he doesn't understand why it's only video for me. He knows grandma lives far so that he understands, but I wish I could see him more, and he's in San Diego right by you, so I could even see you, but.

Kristen (25:52):
We'll get there.

Tita (25:54):
We'll get there. So spiritually, physically, I'm not really working out and doing anything yet because my body doesn't feel strong enough for that. So I have my dog, I walk three, four times a day with him. I play with him. I have really great friends and family who love me dearly, and that gives me a sense of just joy, just people who are just bringing joy into your life, and I feel grateful all the time because of those things. I feel grateful that I am terminally ill or have this illness, but yet I still can work. Matter of fact, yesterday one of my bosses was almost in tears talking about something she's going through and it's work related, and she was very vulnerable and very sad, and I was able to use my life coaching skills to be able to help her get through it, and that made me feel absolutely blessed and powerful, and it made my illness not seem so bad to see somebody else hurting.

Kristen (27:10):
I love the way you're handling it, and I keep hearing, even though you're not using the word, I keep hearing the theme of connection, whether it's connection to your God, connection to your community, connection to yourself and your heart, connection to your job, connection to your missions, and I really do encourage people to reach out and to have that because it can be really lonely. It can be a situation where even though there's a gazillion cancer survivors and non survivors, we always feel like we're the only one really going through it. And so I really encourage people to reach out, reach out to you, reach out to me.

Tita (27:54):
I have to say though, when you have to go to a chemo center, you know you're not the only one, and you see the oldest of the oldest people to the youngest, you know, not children because it's not a pediatric place, but it's not a place of joy. You do realize then you're not the only one, and you do realize some other people are even more sick than you and might really feel like giving up. So I understand now why oncology nurses and such are so just delightful because they realize they're dealing with life or death. It's not like I'm just going to patch you up and send you somewhere else and see if you hope you heal. They're dealing with you for months at a time. They know that there could be a turn for the better or for the worse at any given time, and I'm grateful for my healthcare.

(28:57):
I'm grateful for my nurses. I'm grateful for my doctors, but it is what it is. But here's some other good advice, I just want to say to people, if you're going to be there for somebody, sometimes it might just be to be there to just laugh about something else than cancer. Matter of fact, I've gotten to the point now where if I'm watching TV, not a Netflix movie or a movie, but just watching some TV and it goes to a commercial and the commercial is around health or big pharm medicine, I literally change it. I can't even watch that shit now because I don't want to feel the focus of being around cancer or I'd have to change that shit. So if you have somebody who is going to be around you or a partner or you just need to have somebody who brings you laughter, who talks about you like a dog and makes you laugh, makes fun of you and stuff like that. And you watch some movies and you just watch some movies and you talk and you read about some stuff, but not somebody that's sitting there that's looking at your every move and they're like, are you okay?

(30:10):
All right, do you need something If we're just going to eat,

Kristen (30:14):
Just want to be normal.

Tita (30:15):
Okay, yeah. That's it. As normal as can you be normal because I know I'm not normal right now.

Kristen (30:22):
Exactly. Tell me, I am the most gorgeous bald woman you've ever seen. Yeah, absolutely. I think really being able to be authentic with the people that you're around and let 'em know what you need and let 'em know that you have been living this cancer and so let's do something else. Let's talk about something else.

Tita (30:41):
Sometimes you don't want to fucking talk about cancer. I'm sorry. But yeah, if you can't be there for a friend, even when they're feeling like shit and they just don't want to do anything, but just lay there and be miserable, well let them lay there and be miserable.

Kristen (30:55):
Exactly.

Tita (30:57):
If you can't be around that, be you, do what you got to do, do your work, do whatever. Let them just lay there and be miserable for a minute and then figure out something else. Go to the ocean, lay there. Go to the woods or something.

Kristen (31:14):
I want to talk to you, I want to talk to you all the time, but I want to talk to you when you finish your chemo, and I love you and I'm so proud of you and we're getting there.

Tita (31:26):
Yes.

Kristen (31:26):
We're getting there.

Eva Sheie (31:30):
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Kristen (31:44):
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Eva Sheie (32:33):
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