Joyce Takako is a 44 year old actor and a valuable member of the chronic illness/ disabled community. She’s has varied interests and is supportive and funny.
You are an actor. That’s awsome. Have we seen you in anything?
My stage name is Joy de la Paz. My professional credits include the films My Bloody Valentine 3D with Jensen Ackles and Promised Land with Matt Damon and Frances McDormand. (Yes, Jensen Ackles is even MORE gorgeous in person!)
What illness(es) have you been diagnosed with?
PTSD, Chronic Lyme, Severe anatomical disfigurement and post surgical issues including abdominal pain and deep scar tissue adhesions from a pancreaticoduodenectomy or Whipple Surgery. Luckily the mass was pre-cancerous and removed before needing chemo.
What is your earliest memory of having your gastrointestinal illness?
I was 35 years old and very active; ran in the morning, yoga on lunch break, gym after work. One day I felt fatigued and was hit with abdominal pain. Thinking it was menstrual pain I hugged a heating pad and took Tylenol for three days. Docs found a mass blocking the gallbladder duct. I had a stent put in, four endoscopies [and finally] the Whipple. Amazingly I had no pain or markers like jaundice or vomiting before that. It was like one day I’m going about my life and it just hit me. It changed my life forever.
When were you diagnosed?
2009
What was your diagnosis journey like?
Initially, fast. I had pain, a couple months later, the Whipple. Hearing my diagnosis was shocking, and my immediate thought was “get this the fuck out of me.” I was scared to death but at the same time really wanted the surgery as soon as possible. [Doctors] explained pancreatic cancer and the mechanics of the surgery. After researching on my own, I found that most of us die within 5 years of the surgery so I wasn’t able to find another patient to connect with.
Are there variations of your illness? If so, what is your specific diagnosis?
There are five types of congenital choledochal cysts; I am type two. It is seen mostly in people of Japanese ancestry; my mother is Japanese. No one in my family has any kind of cancer, it is not genetic. I developed it by chance.
How has your illness affected work and/or school?
I stopped working in 2014, with chronic pain, fatigue and explosive diarrhea. The scar tissue I developed after the Whipple adheres my [gastrointestinal] organs…to the abdominal wall and diaphragm. It is slowly suffocating me and I have difficulty walking. Even if a director tried to accommodate me, I’m simply too ill to leave my house.
How has your illness affected your relationships?
It has shown me who my real friends are and which family members honestly care. My illness allows me to see past empty grand gestures and appreciate the consistency of care by those who truly love me.
You are an actor. That’s awsome. Have we seen you in anything?
My stage name is Joy de la Paz. My professional credits include the films My Bloody Valentine 3D with Jensen Ackles and Promised Land with Matt Damon and Frances McDormand. (Yes, Jensen Ackles is even MORE gorgeous in person!)
What illness(es) have you been diagnosed with?
PTSD, Chronic Lyme, Severe anatomical disfigurement and post surgical issues including abdominal pain and deep scar tissue adhesions from a pancreaticoduodenectomy or Whipple Surgery. Luckily the mass was pre-cancerous and removed before needing chemo.
What is your earliest memory of having your gastrointestinal illness?
I was 35 years old and very active; ran in the morning, yoga on lunch break, gym after work. One day I felt fatigued and was hit with abdominal pain. Thinking it was menstrual pain I hugged a heating pad and took Tylenol for three days. Docs found a mass blocking the gallbladder duct. I had a stent put in, four endoscopies [and finally] the Whipple. Amazingly I had no pain or markers like jaundice or vomiting before that. It was like one day I’m going about my life and it just hit me. It changed my life forever.
When were you diagnosed?
2009
What was your diagnosis journey like?
Initially, fast. I had pain, a couple months later, the Whipple. Hearing my diagnosis was shocking, and my immediate thought was “get this the fuck out of me.” I was scared to death but at the same time really wanted the surgery as soon as possible. [Doctors] explained pancreatic cancer and the mechanics of the surgery. After researching on my own, I found that most of us die within 5 years of the surgery so I wasn’t able to find another patient to connect with.
Are there variations of your illness? If so, what is your specific diagnosis?
There are five types of congenital choledochal cysts; I am type two. It is seen mostly in people of Japanese ancestry; my mother is Japanese. No one in my family has any kind of cancer, it is not genetic. I developed it by chance.
How has your illness affected work and/or school?
I stopped working in 2014, with chronic pain, fatigue and explosive diarrhea. The scar tissue I developed after the Whipple adheres my [gastrointestinal] organs…to the abdominal wall and diaphragm. It is slowly suffocating me and I have difficulty walking. Even if a director tried to accommodate me, I’m simply too ill to leave my house.
How has your illness affected your relationships?
It has shown me who my real friends are and which family members honestly care. My illness allows me to see past empty grand gestures and appreciate the consistency of care by those who truly love me.
Do you feel your loved ones care about how your illness affects you?
My husband is a loving, caregiver personality but doesn’t get it all the time. He tries, and that’s what matters to me. He works full time, cooks and cleans when I can’t and doesn’t make me feel bad about it. He takes our kid to the park. He’s been going to doctors’ appointments and advocating for me. That’s love.
My family on the other hand...I was born and raised in a conservative modern Buddhist cult that believes in “teach a man to fish,” victim blaming and other nonsense. There is not much compassion for sick people. Because my illness is congenital, they believe I did something terrible as a child in my past life. [Because] the mass was a freak coincidence and no one in my family had cancer means I did something REALLY bad. I left the cult so now they believe I deserve the suffering. When I need help from a family member, I beg and ask three times. I have to thank them three times or I’m seen as ungrateful and I may not get help again. They care about me when it’s convenient for them or they are in front of other people. My family calls me names like stupid and annoying, tell me I’m “always playing the victim” or that I’m over exaggerating.
You used to exercise, how does it make you feel when people suggest exercise and eating healthily will prevent or cure illnesses?
I was a vegan that exercised three times a day while working two jobs and I still continued to get sick. In fact, [it was difficult for me] to digest vegan diet and any kind of exercise made my condition worse. For almost a decade now I have seen different doctors, chiropractors, physical therapists, and holistic healers. I’ve spent thousands of dollars on supplements, vitamins, oils, protein powders, probiotics, creams, teas, massages, rolfing, yoga. Any kind of movement tugs, pulls and tears the scar tissue, which then creates more scar tissue. Which causes debilitating pain. Suggesting diet and exercise to me is a slap in the face and incredibly inappropriate.
In addition to exercise, how has your illness affected your activities you do for fun?
I don’t have much energy for more than the basics though I try to [cosplay at] both of the major comic book conventions in Chicago every year.
Have you found new activities due to your illness?
No, in fact with such severe pain I’m unable to focus on things I love like reading a book or drawing. It is difficult to listen to music because it allows my mind to wander to dark places. Podcasts are my favorite because I can focus on the words and story. My top podcasts right now are Truth & Justice, Snap Judgment, Ear Hustle and My Dad Wrote a Porno.
Do you have hope for relief for you? A cure? Or do you think your illness is forever?
There is no chance of pancreas or intestinal transplant; all I can do is continue to have surgeries to cut apart the deep scar tissue adhesions. I will always be chronically ill and disabled.
Does the current treatment you’re trying seem effective?
I had a laparoscopy a few weeks ago that has helped some of the terrifying pain I’ve lived with for several years now. I can breathe easier and sleep with my legs extended instead of in the fetal position. I am still in pain, especially after eating or drinking anything, but I’m not in danger right now. I take Zofran and Hydrocodone as needed, as well as MMJ [medical marijuana].
Are you excited about any reports of a future treatment?
Yes, I am starting with a new doctor looking into different nerve damage medications.
What things do you do to maintain hope? Activities? Belief system? Things you look forward to?
My two year old is my reason for living. I didn’t know if I could be a good mom being older and sick but I’m killing it! On manageable pain days we play dress up, read lots of books and walk the hallways or around the block. On high pain days I try to do activities where I can sit in one place like Play Doh or painting. But mostly I know I’m doing a good job because she’s a smart, sympathetic and kind person, I’m so proud.
Watching other Disabled/Chronically Ill parents on Twitter doing things with their kids makes me think, “I should try that! Maybe I have the spoons too!”. I’m constantly encouraged, I’m so grateful.
My husband is a loving, caregiver personality but doesn’t get it all the time. He tries, and that’s what matters to me. He works full time, cooks and cleans when I can’t and doesn’t make me feel bad about it. He takes our kid to the park. He’s been going to doctors’ appointments and advocating for me. That’s love.
My family on the other hand...I was born and raised in a conservative modern Buddhist cult that believes in “teach a man to fish,” victim blaming and other nonsense. There is not much compassion for sick people. Because my illness is congenital, they believe I did something terrible as a child in my past life. [Because] the mass was a freak coincidence and no one in my family had cancer means I did something REALLY bad. I left the cult so now they believe I deserve the suffering. When I need help from a family member, I beg and ask three times. I have to thank them three times or I’m seen as ungrateful and I may not get help again. They care about me when it’s convenient for them or they are in front of other people. My family calls me names like stupid and annoying, tell me I’m “always playing the victim” or that I’m over exaggerating.
You used to exercise, how does it make you feel when people suggest exercise and eating healthily will prevent or cure illnesses?
I was a vegan that exercised three times a day while working two jobs and I still continued to get sick. In fact, [it was difficult for me] to digest vegan diet and any kind of exercise made my condition worse. For almost a decade now I have seen different doctors, chiropractors, physical therapists, and holistic healers. I’ve spent thousands of dollars on supplements, vitamins, oils, protein powders, probiotics, creams, teas, massages, rolfing, yoga. Any kind of movement tugs, pulls and tears the scar tissue, which then creates more scar tissue. Which causes debilitating pain. Suggesting diet and exercise to me is a slap in the face and incredibly inappropriate.
In addition to exercise, how has your illness affected your activities you do for fun?
I don’t have much energy for more than the basics though I try to [cosplay at] both of the major comic book conventions in Chicago every year.
Have you found new activities due to your illness?
No, in fact with such severe pain I’m unable to focus on things I love like reading a book or drawing. It is difficult to listen to music because it allows my mind to wander to dark places. Podcasts are my favorite because I can focus on the words and story. My top podcasts right now are Truth & Justice, Snap Judgment, Ear Hustle and My Dad Wrote a Porno.
Do you have hope for relief for you? A cure? Or do you think your illness is forever?
There is no chance of pancreas or intestinal transplant; all I can do is continue to have surgeries to cut apart the deep scar tissue adhesions. I will always be chronically ill and disabled.
Does the current treatment you’re trying seem effective?
I had a laparoscopy a few weeks ago that has helped some of the terrifying pain I’ve lived with for several years now. I can breathe easier and sleep with my legs extended instead of in the fetal position. I am still in pain, especially after eating or drinking anything, but I’m not in danger right now. I take Zofran and Hydrocodone as needed, as well as MMJ [medical marijuana].
Are you excited about any reports of a future treatment?
Yes, I am starting with a new doctor looking into different nerve damage medications.
What things do you do to maintain hope? Activities? Belief system? Things you look forward to?
My two year old is my reason for living. I didn’t know if I could be a good mom being older and sick but I’m killing it! On manageable pain days we play dress up, read lots of books and walk the hallways or around the block. On high pain days I try to do activities where I can sit in one place like Play Doh or painting. But mostly I know I’m doing a good job because she’s a smart, sympathetic and kind person, I’m so proud.
Watching other Disabled/Chronically Ill parents on Twitter doing things with their kids makes me think, “I should try that! Maybe I have the spoons too!”. I’m constantly encouraged, I’m so grateful.
