TRONG NGUYEN / SAN DIEGO CA

Meet Trong, our ambitious go-getter whose mother was diagnosed with breast cancer. He is an independent student on the road to obtaining his doctorate in physical therapy.

 

Blends traveled down to San Diego in hopes of getting an alternative perspective on breast cancer and Trong definitely provided much insight. His relentless dedication and tireless efforts are awe-inspiring.

My mom. She’s no longer here but she was part of the whole concept of breast cancer in my life. I don’t know if there was a history of breast cancer. She came here from Vietnam and she tried talking to them [her family] over there but we don’t know.

 

This all happened in 2011. There was a few times she would tell me to go to the doctor and check yourself out here and there. We’re an Asian family. They [the parents] don’t go to a doctor themselves; they [just] try to cover it up. I had a checkup for myself and we checked her in too. [During the checkup], the nurses were telling me, “We need to send you to this place for a mammogram, stat.” They didn’t tell us directly that it was breast cancer; they just said that it was lump and that’s where it began.

 

I was finishing up my undergrad at California State University, Long Beach [and] there were a lot of things going on. After the mammogram, we did find out that it was cancer. There was this time that it was really painful for her [the lump] and she asked, “What is this?” and she showed it to me. I looked at the skin and it was inflamed, it was black. You could see that her breast was very irregular. I remember thinking this is not normal. She didn’t know what was going on and she just had chest pains. I think at 12 AM she was just like, “It hurts.” I took her to the hospital to figure out if there was anything we could do. From there, they just took x-rays. They said that the cancer itself was spreading a lot. It was within her breast, into her lungs, and her liver. The only thing they could do now was to give her medication for the pain. So they gave her morphine and it calmed down [the pain] from there. Treatment was from 2011 – it took three years.

It was a long process of chemotherapy, almost two and half years. A lot of doctor appointments here and there. I was still going to school and trying to get my doctorate degree. It was just my mom and I. It was difficult. Everybody left at that same time, they all moved out on their own – sister was up in LA, younger brothers was up in LA, older brother out on his own. It was me mostly combining everything together and trying to get the family to participate a lot. But, it’s been like this growing up, everyone doing their own stuff. Being the third child, I was the communication between my mom and my family. I got used to just doing it and not asking for help.

 

Through the whole process, we could have appointments three to five times a week just to follow up on a lot of medications [and] the chemotherapy. We didn’t start radiation until a little bit after but there was a lot of blood testing. A lot of other systems were involved, like the lungs and the liver, so we had to check up with other doctors. It was a long process going through it.

 

We finished chemotherapy in 2013 of October and that’s when they said, “It got really small now so you guys are good. The nodules in her lungs are disappearing, the liver looks ok, there’s nothing really active. The main thing is that you have a big mass in her breast.” They offered the option to do a mastectomy. We were like this is progress for us so were going to take it. I remember going there early in the morning and she didn’t know what was going on. My mom, she takes things as is. When she got out [of surgery], she was just lying there and she was like, “Okay, when are we going in?” They [had] drugged her when she went in [and] when she woke up she was like, “I’m so dry” and I’m like, “Its ok were almost done.” She was like, “Oh, when are we going to go in though?” I said, “You just came out.” She looked at her breast and there was tape on it and she just said, “Oh, so that’s why there’s tape on me.” It was a partial [mastectomy] so they didn’t have to take everything out, she responded really well to the chemo.

 

We thought we were pretty much done and they were going to set us up for radiation. But things kind of went down hill a little bit. After a while, when she was at home, she was having trouble walking and trying to grab things. During treatment, I was always going to school. I would come back [to her], make dinner, then I would go to work, then come back during break to make sure she was eating, and then go back to work. It was a lot of back and forth with things. A lot of time managing. Whenever I would get home during my break, the house was a mess because she was trying to walk and she was knocking things over. I’m like this isn’t right. I remember this one time I was like, “Don’t try to walk around so much, we’re trying to figure out what’s going on.” When I came home [later that day], she fell and hit her head when she was trying to go outside. She would try to grab her cup but would miss it. I called the doctor and he said, “Maybe she hit her head and there was internal bleeding.” So, when I went to the hospital, they said there was a mass that they found. They weren’t too sure if it was a new mass or the breast cancer mass. But, breast cancer itself tends to go to the spinal cord and then goes to the brain [and] most likely that was what happened. The sad part is that we didn’t know it was there. It was the size of a golf ball. They put the radiation on hold and said, “Don’t worry about the chest too much because we already got it. Lets focus on the head now because anything with the brain, vessels could break and it could get worse.”

 

During this time, she was losing a lot of control on the left side because the mass was on her right side. So, we decided to stop focusing on the breast and focus on the brain. They gave us the option: either have surgery or Gamma Knife radiation, which is really dense radiation directed to the brain. To do that, they require you to screw four bolts and it has to pierce your skull so it can keep in place and you’re still awake. I just remember her screaming. When she was done, they gave her medication but she wasn’t aware of it. Her thinking process wasn’t there. We ended up doing that and they said the results were good and most likely it could kill 75% or even more. So, we continued on with the treatment.

A month later we did radiation to the breast. This was in 2014. We did almost two months of radiation, Monday through Friday, everyday. I remember trying to coordinate my work and getting her to her appointments. We thought everything was going well, a lot of the family was just trying to support each other. We tried to get everything done for my mom’s sake and our sake. Sometimes [though] she didn’t want to go because she was so weak and so tired but there was no other choice in what we had. It’s like this can be cured or you can get even more sick. After a while, we thought she was good but when we finished radiation there was a downfall again. She got a pulmonary embolism, which is a clot and we didn’t know about. She would have massive bleeding in her lungs. I went to work for two hours and when I came back, she was on the ground heavily breathing. From then on, we knew that she needed 24-hour service. I was able to talk to the hospital and they took her to a skilled nursing facility. That’s where I knew she had the care that she needed because at home, I couldn’t do that while I was going to work and school. During that time, I wasn’t sure what was going to happen because I just got accepted to school in San Diego and I wasn’t sure if I should take her with me or a family member was going to take her.

 

It wasn’t too well after that. We [the family] wanted to say, “Stay positive” and say, “Things are going well” but we would take two steps forward but take three steps back. It was going back and forth for a while. She stopped walking after her embolism because it damaged her lungs. At one point, she was getting seizures again and we found out the tumor came back in the brain. We had the choice to let this keep on going with the seizures increasing rapidly or do the Gamma Knife radiation again. We thought about it a lot. This was going to be the last treatment; if this didn’t work we were going to let things settle the best we could. So, we did the radiation again in August 2014. We thought it was going well because the seizures stopped and she was able to move her hands and feet. The pressure in her brain had caused her to sleep a lot but after [the Gamma Knife radiation] she was more awake. But, it just went downhill [after the radiation] because it [the tumor] was still rapidly growing and we couldn’t do anything about. She was basically in a comatose state in November. Then in December, they said they were going to transfer her to a hospice and that she had less than six months. From then, there was a change; like we planned it but we never prepared for it to actually happen. Everyday, I’m still just travelling back and forth just to see her. She passed away this year, February 2015.

 

 

There was a few times that I blew up [on my family] saying, “You guys aren’t doing what you can do, I’m here and I’m doing what I can. I’m sacrificing my time.” During the time when she couldn’t walk too much, she basically became a small baby at home. I had to take her to restroom and help her walk. I basically woke up every two hours at night because I would hear her moving, trying to get up. It was hard having everyone on the same page because we were trying to update each other all the time. The family was the only thing we had. We did have our meetings and it actually brought us closer. Sometimes it strayed off a little bit and that’s where we would have to get the meeting again to get us back together and see the bigger picture of what was going on. It was just a roller coaster ride, like “Yeah, we’re almost there!” and then it would go down. It was crazy. It was just going up and down and always hoping it was going to be better. Talking to the nurses, they tried to get us to see the bigger picture. With me being in healthcare, I know yeah, it is bad but you always have that chance of saying, “Yeah, she’s still here with us and it’s going to be okay.” Even when you’re prepared for it, you’re never ready.

My classmates helped me a lot actually; a lot of school, a lot of studying, a lot of late nights – I don’t sleep much. During that time I became the classmate that they would ask, “How many hours did you sleep today?” I’m just like, “The usual two hours.”

Both family and friends. The family, I know they tried their hardest. Everyone has their perspective of how much they can limit themselves and I try to not limit myself with anything. I really push through with anything, like with no sleep. I tried to push [that] through with the family too but I would understand that sometimes, it was too much for them and they couldn’t handle it. You know, take your break but come back though. So, through all that, family helped out a lot – talking to them, we have a chat group where we call each other a lot and we have our meetings. With friends, sometimes we’d just let loose and we’d talk about it.

When there was an appointment I would head back to Orange County, and when I finished, I would come back down to San Diego. It was just jumping back and forth and doing stuff. I work hard and when I think about it, I try not to take things lightly.

When my friends were like, “How do you do it?” I’m just like, “I don’t think about it.” I made this whole thing, I have my Nikes on and I’m just going to do it. I just say random motivational things. When my friends explain to me that I did a lot, I’m just like “Yeah that is pretty crazy.” I try not to live with thinking about the past because it just kills me. So, I just think about what’s ahead and just move forward. It is crazy to think about it.

 

It also depends on the person too. For me, I was always trying to stay positive about it. It really depends on you. I really pushed myself to not think about all the negativity in life and really look at the bigger picture. If it is not going to completely stop you, then you can keep on going. A lot of self-motivation, I did that a lot.

Just based on what I know, positivity goes a long way. It’s not about bashing yourself or bashing her [his mom]. We have to think about what we have to do now, this is happening so let’s plan. It’s just staying ahead of the game. Life does have a purpose. Don’t think badly about everything; it’s going to wear you down a lot.

Don’t be scared to ask for help. Doctors, a lot of researchers are there, family, friends, just talking to them about it or venting about a few things. But after you vent, you don’t want to stay in that mindset. Just move forward. Think about what you can do for both yourself and for them.

 

People are always busy with stuff – working, schooling, having fun – take it back a notch and take care of your self. Just follow on those routine checkups here and there. It might cost a little money but it goes a long way. Take care of yourself and when people see that, they’ll take care of themselves too. That’s the main thing – take care of yourself.

When people think about cancer, they think its like death. Cancer is death. But, there is an experience from it. I want to say, don’t think about it like it’s a story that’s going to end because there’s so much more to it. You can live above the cancer and how it influences you. Don’t think about it as a one-way trip. It’s not going to be all dark. There’s a lot of positivity coming out it. In a good way, it did bring my family closer.

 

For the person going into it, it’s not a bad thing in general. It does change your perspective about what life is.

A Note from Trong.

With everything that has happened, I know I couldn't have gone through this without my family: my brothers Johnson Nguyen and Michael Nugyen, and my sister Toni Nguyen. Family has always been first on my list, and I love them to death. I also want to say thanks to all my friends for their support, love and prayers. And, especially to my mother, Hoa Luong, who showed me how to be strong by being with her to the very end. She is the true meaning of strength, and for that I will always love her. I lost a part of myself that day and I know it doesn’t get any easier but we get better at it. Keep smiling from above. And thanks to Blends also!