Advocacy Tips From an AML Patient

Advocacy Tips from an AML Patient from Patient Empowerment Network on Vimeo

AML patient and Empowerment Lead, Sasha Tanori, shares her advocacy tips, and the importance of being honest and open with your oncologist.

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How Does One’s Culture Impact AML Care

How Does One’s Culture Impact AML Care

What I Wish I Knew Before My AML Diagnosis

What I Wish I Knew Before My AML Diagnosis

How I Overcame Biases During AML Treatment

Transcript: 

Sasha Tanori:

Okay, so my number one thing, I guess I could…a tip sort of that I can give to women specifically or non-gendered people, if you want kids, I would definitely say to talk to your doctor as soon as you find out, even before you start doing the chemo, if you can just really, really talk to them and see, I think there’s anything that they can do for preserving your eggs for the future, because even though it may seem like you know it’s just no, not big deal. Not everyone gets the opportunity again. I know there are some people out there who might be able to, but it’s not a guarantee. And it sucks to have that opportunity kind of taken from you in a way, and I know it’s not something that you’re thinking like, “Oh well, it’s life for death.” And…yeah, I understand, and I get that, but in the moment, it may feel that way, but you never know how are you going to feel five, six years down the line when you’re pushing 30 and you’re like, “Oh my gosh, My opportunity is gone. You know, there’s nothing I can do about it.”

So that would be my number one tip. Definitely to be honest. Be honest and open with your oncologist, find some type of tips or tricks, or even if you just need someone to talk to about the infertility…it’s definitely worth it. Another thing I would say is to be really, really open with your oncologist about everything you’re going through. Nothing is too embarrassing and I know that’s a lot easier said than done, but I think being honest about what you’re going through, whether it’s mentally, if you’re going through depression, anxiety, if you’re having suicidal thoughts or tendencies, that’s definitely something you should talk to your oncologist about, so they can help you reach out to find some type of counseling. Mental health is very, very important when it comes to this. Your mental health will make or break you during this journey, and you have to find some type of close community, whether it’s your friends, your friends, your family, or just your oncology team, like someone that you could reach out to and talk to about everything, lay it all on the table and now I’m feeling guilty because I survived that my friend didn’t, or I’m feeling anxious because I have the scan coming up, and this is the third one in like two months, you know? There’s so much things that are going on in your head and to keep it to yourself, it’s a lot and it’s not fair to you, you need to be able to speak up and tell people what you’re going through, it doesn’t matter who it is if it’s your friend, your mom, even your oncologist, but they’re going to understand and they’re going to help you.

There are lots of resources out there that will definitely make this a lot easier. Another tip I would say is, talk to your oncologist about the good, the bad, and the ugly when it comes to your side effects because if you stay quiet about it, you’re going to really regret it. There have been many times where I was just too embarrassed to be like, :Oh you know what, I have this really bad rash on my butt, and I don’t know what to do about it.” So finally, they’re like, “Why didn’t you say something? Oh yeah, we can give you a cream, or we can do this or that for you.” And you’re just like, “Oh, okay, that feels so much better. Thank you.” But at the time, you’re probably just like, “Oh my God, I’m so embarrassed, I don’t want anybody to know about this. I don’t even want to tell my parents, I don’t want to tell my friends.” But I mean, this is all related to your cancer journey, one bad side effect can lead to something else, which could lead to something else. So it’s very, very good to try and be open and honest when it comes to your side effects, your emotions, your body, if you’re gaining weight or losing weight, if you’re losing your hair again, if you’re losing your eyebrows, you know talk to them, find out if there’s any solutions that can help because…

It’ll definitely make a big difference. I would say definitely another big thing would be to try and build a community through social media. Having friends or even just strangers on your feed that you see go through the same things you go through makes you feel so much less alone. I have been able to… I’m very happy that I’ve been able to make friends on social media through Instagram, Facebook, Twitter, just start adding everybody goes on Facebook groups that are specifically for AML, so you can just type in AML recovery, AMLl survivors, AML, family groups, caregivers. There’s a lot of things out there that are definitely beneficial and it helps to talk to others about it, so you feel less alone. Definitely. So I think those would be my biggest tips for expressing your advocacy.

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How I Overcame Biases During AML Treatment

How I Overcame Biases During AML Treatment from Patient Empowerment Network on Vimeo

AML patient and Empowerment Lead, Sasha Tanori, shares how she had to overcome several biases to get doctors to take her symptoms seriously.

See More from [ACT]IVATED AML

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How Does One’s Culture Impact AML Care

How Does One’s Culture Impact AML Care

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Advocacy Tips From an AML Patient

Transcript: 

Sasha Tanori:

So, of course, I can’t speak for everybody, but of course for me, I am Mexican American, I’m from a little small area called The Imperial Valley, it’s like at the very, very bottom of California, and it’s literally like 20 minutes away from Mexico. So right off the bat, I experienced a lot of low-income poverty type of bias, I guess you could say. And then being plus size, that was another thing when I initially first went…I remember one of the first things that they told me, I was like, “Well, first of all, you’re obese, and you need to lose weight.” And I was like, “Well, I have to deal with the bruises?”  And they were like, “Well, maybe your body.” They’re just coming up with different excuses as to why, maybe it’s because I have this problem or that problem, and I was just like, “Well, no, I don’t really think that’s the issue.” So then they had misdiagnosed me, I got sent home and then when I had went back to the hospital, that was another thing they brought up again, I was in the hospital, because I had a giant bruise on my lower back, and it was like I looked like a tire mark. And they were like, “Okay, well, it says here that your BMI is high.” And I’m like, But what…what does me being plus-sized have to do with the giant bruise on my back? This doesn’t make any sense.” No correlation, nothing.

So that was another big thing that just has always irritated me my entire life, I’ve always been a pretty big chubby girl, so if I had hurt myself they would always bring up my weight somehow it’s just like, that is looking to do with me breaking a bone or me having the cold or something dumb like that. So that was another thing that kind of bugged me whenever I was first diagnosed, they would always kind of bring up your weight, and another thing is that because I live in a low-income community, we don’t have resources like cancer doctors down here, I think there’s like maybe two and they’re not even in my local town, they’re in the town over. That’s like a 10-minute drive. So when I was first diagnosed, I was at the hospital for 12 hours. I was there with my mom and they had no clue what was wrong with me, so then I got sent to San Diego, which is like two-and-a-half hours away, and when as soon as I got there, within like 30 minutes, I was diagnosed with cancer.

So that’s how quickly they were able to catch it and everything, but in my local town they had no clue what was wrong, they didn’t know it was cancer, they didn’t know what was going on. They just kept doing tests after tests after tests, and they’re on blood work, and finally, they were just like, “We have no clue, we’ve got to send you somewhere else. You’ve got to get in an ambulance and leave.” So we were just like, “Okay.” So yeah, that was definitely something that…it has a lot to do with my culture. I live in a small mostly Mexican-driven city location, I guess the Imperial Valley is like a valley, I guess it has five or six different little towns all put together, so a majority of us are Mexican, so we’re considered low-income poverty, we don’t have a lot compared to when it comes to bigger towns like LA or San Diego or San Francisco, but yeah, I think those were my biggest issues. And then, of course, being a woman. No matter what, you’re always going to get that. People aren’t going to take you serious. We’re going to get that, “Oh, man, she’s just overreacting. She’s on her period,” or your typical misogynist stuff that people say about you. But those are my biggest things or I guess adversities that I had to go through when it came to my cancer journey.

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What I Wish I Knew Before My AML Diagnosis

What I Wish I Knew Before My AML Diagnosis from Patient Empowerment Network on Vimeo.

AML patient and Empowerment Lead, Sasha Tanori, shares what she wishes she knew and what to ask before her AML diagnosis, and the importance of advocacy.

See More from [ACT]IVATED AML

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How Does One’s Culture Impact AML Care

How Does One’s Culture Impact AML Care

Advocacy Tips From an AML Patient

Transcript: 

Sasha Tanori:

So, one of the biggest things I wish I knew, especially before, was the whole saving your eggs type thing for fertility. That’s one of the biggest things that I honestly really regret because here it is almost what…five, six years later, and I, unfortunately, am infertile, so it really does suck because that was something that I was really looking forward to in my life was like being a parent or being a mom, and at the time, it’s just like…everything happened so fast, it was like, Okay, we’re going to…We did the chemo, and now we’re going to do a couple more rounds and then it’s like, Oh, we found a donor, so you could have your bone marrow transplant…oh my gosh, I can’t say the word, your bone marrow transplant. I think I had mentioned it to my doctor, but he was like, “Well, if we wait, now we’re going to lose the person who’s going to donate to you.” And I was like, “Okay, well, we need to hurry up and get that done, get it over with.

So back then, I really wish I would have advocated for myself more, ask more questions and because thinking back, I’m like, I don’t mind if I would have waited until after having my eggs frozen to find another donor, I think that possibly there could have been someone else out there.

But I think it was just in such of that state of mind of like, “I need to hurry and get this done. It’s life or death, I’m going to possibly die type of situation.” But you know I’m like, “No, I think I would have been okay if I would have waited another month or so until after I froze the eggs.” But you live and you learn, and there’s not really much you can do about it now, unfortunately. But at the time, I really wish that I would have spoken up and advocated for myself more if I would have known that that was going to happen, because like I said, five years later infertile can’t really do anything about it, you know? Yeah, my life is saved, but I can’t have kids though, so you just kind of think it heartedly about it, but yeah, that’s one of the things I really wish I would have advocated for myself more about. For now, I think everything else has been kind of…it’s been good. I mean, I’ve taken it step by step, by day, you just got to put on your big girl panties or put on your big girl shorts, I guess you could say, and just continue going about your day, you gotta wake up, do your job, take care of your family, take care of your life.

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How Does One’s Culture Impact AML Care?

How Does One’s Culture Impact AML Care? from Patient Empowerment Network on Vimeo.

AML patient and Empowerment Lead, Sasha Tanori, shares how her culture impacted her care and how her diagnosis opened her family’s eyes to start taking care of themselves.

See More from [ACT]IVATED AML

Related Resources:

What I Wish I Knew Before My AML Diagnosis

What I Wish I Knew Before My AML Diagnosis

How I Overcame Biases During AML Treatment

Advocacy Tips From an AML Patient

Transcript: 

Sasha Tanori:

My culture made a big significance in my care, because it was something that my family, especially my dad with the Mexican side, it wasn’t something that you did. You didn’t go out and seek care if you are hurt, you just sucked it up, you went to work, you went to school, you did your job, you took care of your family, and that was it. If you had any type of ailments or illness, you would just rub some Vaseline and do the sana sana and just move on about your day. So when I started getting the bruises and the tiredness and the fatigue, my dad was just like, “She’s just clumsy, she’s just making it up, or she’s being dramatic,” and it was never a big deal to anybody, especially with him. You know my mom, she’s a little bit more on my side with everything, so she was like, “Oh yeah, you know, maybe you should go to the hospital. Maybe you should go check this out, maybe you should go do that.”

But finally, it was my cousin who convinced me about like a month after all, I was going through all of that to go to the hospital, and still my dad was just like, “Man, she’s going to go to the hospital and be there for 12 hours, and nothing’s going to be wrong.” He was so sure that everything was fine, so finally, when I had went, and I found out I had cancer, I think it really opened my dad’s eyes to realize, “Wow, maybe she wasn’t lying.”

Maybe she wasn’t making it up. But yeah, I think it was a really big step on my part being Mexican American, to finally take that step to take care of myself, especially physically and mentally, you know? God forbid, you have depression or anxiety in a Mexican household, they’re just like, “No, no, no, there’s no…what do you mean you don’t feel good? Just walk outside, drink some coffee, you’ll be fine. Get over it.” So yeah, I think it really opened my dad’s eyes, especially seeing me so sick for him to kind of realize, “Wow, you know, this stuff is kind of serious.” Because now he goes to the doctor, he takes his medication, he takes care of himself more.

But yeah, having that type of cultural background in your household, it’s really hard to express how you’re feeling when it comes to your mental and physical health. It’s hard to walk up to your dad and be like, “Hey, Dad, I’m not feeling good, can you take me to the doctor? Or can we talk about this?” And she’s like, “No, no, no. We don’t talk about stuff. No, we don’t go to the doctor, we don’t do any of that stuff, we have to stay strong and work and take care of the family.” We’re not allowed to be sick, we’re not allowed to take care of ourselves pretty much, I think…

Thankfully, me taking care of myself has kind of helped him as well to take care of himself.

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