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Oct 10, 2015

Lorena’s Experience

Lorena was interviewed by Ana Maria Reyes and Brian Rivera on March, 2015. Questions asked by the interviewers are in bold.

I Have Synovial Sarcoma.

What most people don’t know is that when you undergo treatment as aggressive as this, it targets not only cancer cells but also fast and slow-growing cells all around the body – including the lining of the stomach, nails, and hair, hence the hair-loss during chemotherapy. Up until now, there hasn’t been any worthwhile developments in medicine that targets solely cancer cells.

My cancer is located in the joints between my lower jaw and skull, namely the temporal mandibular. It creates bad joint pain and sometimes doesn’t let me to chew, talk, or eat. When I was first diagnosed at the beginning of this year, the doctor gave me two options: surgery to remove the cancer cells or an on-going treatment.

Photography by Myrna Pelaez.

 

Featured on Volume 3

Why isn’t surgery the best option or the easy way out? Well, the doctors wanted to make sure it doesn’t spread to my lymph nodes – where it can then be spread everywhere else in the body. The good thing about taking the medication is that, unlike chemotherapy where the effects are immediately felt, it takes longer to take over. It’s not injected through an IV but instead consists of pills being swallowed periodically. The effects come an hour or so after I ingest the medication.

The thing is, the medication prolongs the symptoms and drags it throughout the day. In the beginning of studio, for example, I would feel fine. But then, towards the end I start to feel nauseous, crappy, and really tired. However, the medicine gives me more control. Postponing or delaying the treatment for a few hours a day is an option – although not recommended – and it allows me to adjust it based on my schedule.

Speaking of studio, you’re really determined to stay in school despite your circumstances. Definitely. Staying in school was my main choice. The last time I went through this, I took time off from school and it set me back. [For those who don’t know, Lorena was previously diagnosed with a different form of cancer 2 years ago. She underwent intensive chemotherapy and was momentarily cancer-free.] I’ve experienced leaving school once before and it affected my family, my friends, and myself. It was a very emotional experience. It felt as if I was going to have to drop out for good. I told myself: If I don’t help myself, then my mental and physical health will deteriorate. I wasn’t going to give up that easily especially after everything I worked so hard for.

Fortunately, right now my professors are all supportive. I have the resources, and a sense of feeling better this time around. It’s still a struggle – and the workload we have as architecture students is impossible to keep up with at times. There’s days where I’m physically not capable to do anything.

And then there’s bad days…

Once, I woke up to get ready for school, but I ended up in the bathroom all morning. I then made an effort to look presentable and head to school – but the minute I arrived I began feeling nauseous and light-headed. I called my aunt and she said: tomorrow will be better. Today is just a bad day, so accept it and remember it will get better. That’s how I stuck through that day.

Worst Days

I’m tired of certain people. Architecture is a clicky environment – not everyone gets along. And that’s fine, I accept that. But people talk and whatever they say will eventually get back to me.
I shouldn’t let it bother me, but ultimately it does. Last Fall, I broke my foot and had a car accident, which prevented me from having my work completed. People now see me as lazy, or a slack.
“…that’s exactly how she was last semester.”

And it’s not like I’m ever going to come and yell at them. But it just sucks when people talk and don’t know the full story or the whole experience. And it shows a lack of support. Yes. But then there are people out there who are always supportive of me and willing to compromise for my own sake.

For the London/Berlin study abroad trip, for example, my roommate agreed to share the room with me understanding the full extent of my circumstances. I gave her and my professors a heads-up to avoid shock or any surprises down the line. The only thing I asked of her was to answer a question: do people really say stuff about me?

And she confirmed that they do indeed talk.

How was it like, cutting your hair back in 2013 when you underwent chemo? Cutting my hair short was the hardest part, emotionally. Days before, I would brush my hair before applying conditioner in the shower, and saw large amounts of hair on the brush. That got to me.

The thought of having patches of hair, or no hair at all in some places was scary. One of my friends suggested I cut it short, so that if it does fall out, it won’t be as noticeable. Hair is a symbol of you – especially as a woman. It frames you, and boosts your self-esteem. There’s such a big impact – ripping away a part of you. And it hurts when you have no control over it, or no choice at all.

It’s a transformative experience, but it comes with its reaction. I received a lot of positive feedback, which made me feel better. It gave me the security, and I’m mentally prepared to take that step again, since I’m not emotionally scarred by it.

[As of the writing of this article, Lorena has had to undergo chemotherapy again. She cut more than 10 inches of her own hair on Tuesday, June 23 2015 during sunset. It was a bittersweet moment.]

Victim

In 2013, during my first diagnosis, my boyfriend-at-the-time went with me to my first appointment. Then later on that day, I was on my way to fly to Denver and fell extremely ill after taking the wrong combination of pills. It was a disaster – I threw up on the way to the airport, on the plane, everywhere. Later that week, my mom had suggested I get pill containers with the days of the week marked to avoid the same mistake. After coming back from the pharmacy and laying it out on the table, he gave me a death stare as I sorted out my pills, and said: “Can you please not do this in front of me?” And that hurt. “It’s hard enough to know, but I don’t want to see it.”

That was all he said. I had to hide in the bathroom to organize and take my pills. After that, nobody has ever seen me taking them. It was like everyone was uncomfortable by my situation and wanted to ignore it all in disregard to how I felt.

Most people think these experiences change you negatively. However, for me It didn’t; It made me stronger.

Hospitals

I became close to all the nurses and doctors. I’ll never forget when one of them told me: “I can only imagine how your mom is feeling.”

I never resented being there. People genuinely cared and did the most to make you feel better. The hospitals definitely were not the worst of this all.

Undergoing cancer treatment deteriorates your immune system, and you’re prone to getting sick. Once, I was hospitalized for 10 days and I had a cardiac monitor and was intubated. Being there just started to feel normal.

I keep all my hospital bands and visitor passes from people who visited me. I still have my hospital robe, and the Relay for Life memorabilia.

When you’re hospitalized, you don’t do much and are bored all the time. During my stay, I actually read 50 Shades of Gray. I watched a bit of TV, had conversation with the nurses, and slept A LOT.

You sleep more than you want to, because there’s nothing else to do. With that much time, you just have a lot of time to think of the good things and bad things.

I would sometimes think of how things would be if it got worse. I also discussed with my mom what I would’ve wanted if I passed. It’s a conversation nobody ever wants to have: nobody likes talking about death.

Yet, we find ourselves with the thought of what if.

I mainly just wanted to let her know what I wanted, in the event that the “what if” were to happen – such as that I don’t want to be cremated, but sent back home to Colombia and buried next to my grandparents and uncles. I discussed who would keep what. Such as my cousins getting my clothes, etc.

Chances

I’ve had sit-downs with the doctor, and we would discuss the projection of what the future looked like. I had a direct sibling with this – who was also affected around this age – and an uncle who had lung cancer at only 24 without ever smoking in his life.

My half-brother was diagnosed at 24 with Stage 4 and passed away.

And now me at 22.

My chances for relapse were high, which is why I wasn’t surprised this time around. For my first diagnoses, I was in denial. This time it’s just so different.

When you talk about it, it’s in a very calm demeanor. When people think that, I’m just like, “I’m sorry, but am I supposed to tell you this crying?” I’ve already done the tantrums, the crying, the drama.

I victimized myself at such a young age, that at this point, I’m just being honest. It is what it is.

When you told me, you were calm, as if it was regular dialogue. I see that you don’t want to act like the victim. But you have the right to be. You shouldn’t have to censor yourself to us. We should censor ourselves to YOU. Your ex-boyfriend, for example, struggled when he should’ve seen the struggle in you. Your demeanor is strong because you’re strong. I let other people’s actions and words get to me. People always ask, “Why do you say you’re sorry?” Whereas other people just feel helpless.

For example, one of my close friends said to me, “I hate seeing you like this, because I don’t know what to do.” I hate making them seem helpless. I’m very apologetic, and I want everybody to be okay. I worry about others more than myself.

Is there any way we CAN help you? I need help with certain things that I can’t be helped with by others. People are usually like, “I’ll do your homework. I’ll do your model. Or your drawings.” I’m like no, teach me what you know. I have such a crutch with architecture. I’m always 3 steps behind. I can’t be satisfied with other people doing the work for me. I need to learn how to do it and only then will I feel accomplished. Help me keep up.

If I made the decision to stay in school, I’ll work extra hard to stay on track and learn. Nobody can make my pain go away, but they can help.

Some of my friends have distracted me so much, and I felt better because my mind was somewhere else. My mind wasn’t focused on where I was feeling pain.

Mind Over Matter

If your mind isn’t on it, you won’t feel it as much. That’s when you realize the power of your mind. If you focus on it, it’s not going to go away.

I feel that the architecture environment is ironic how we speak of being sustainable – we’re in a major where it’s all about the betterment of somebody – we’re designing somebody’s home better – someone’s office better. Conservative this. Conservative that. We have so much vocabulary. But we don’t apply it in the environment ourselves. We’re too clicky. We’re so competitive that we talk about other people to bring them down unaware of what their circumstances are. I’m not only referring to my situation, but other peoples’.

All this is happening where I need it to be because of where I’m moving with my career. I’m able to design based on my experiences. It’s so different when you’ve been in it yourself.

Just because you’re the top doesn’t give you the power to say someone’s work is crap. Unfortunately, things are happening in the background that you’re unaware of. We forget what we’re doing – we become engulfed in this major that things just stop being right. All these experiences have definitely given me the absolute certainty with where I want to branch out in architecture – which is healthcare design.

That’s definitely something I want to do, after spending so much time in hospitals. Hospitals have this stigma where they’re known for being eerie or sick. But there’s an irony in what the hospital is for – which is to make you better. We’re designers, we’re there to improve. Are we doing that amongst ourselves? If you have all this knowledge, instead of rubbing it in my face, teach me. I think we’re lacking in that environment. We’re still immature in that aspect. Hospitals could definitely be better. There’s plenty of room for improvement.

People are scared, however, because hospitals take away the freedom of design – of being artistic – because of standards and codes.

I’m lucky that I’ve been diagnosed in the stages of 0 and 1. Stage 4 means it’s been metastasized. Stage 1 means it’s centralized and they know where it is. Stage 2 means your lymph nodes took it to another place.

I’ve seen stage 3 and 4, and these people never leave the hospital. I have the liberty of taking total control of my medication. There were people in the hospital my age going through this and much worse. While staying long times at hospitals without anything to do, why can’t they simultaneously go to school there? There’s a lot of possibilities.

I truly believe things happen for a reason. All this is happening where I need it to be because of where I’m moving with my career. I’m able to design based on my experiences. It’s so different when you’ve been in it yourself. It’s the biggest reason why I stick through school. If I go through it again, then fine, but I’m sticking with my degree and my school. I want to ultimately do healthcare design – and that’s why I’m staying.

Why is it that we feel so great at the museum but feel terrible at a hospital? Then what’s the hospital’s purpose? There is all this advancement in technology and you’re still not getting better. It’s the environment that needs to change. If you’re not happy where you are, things aren’t going to get better. Hospitals need to improve in all aspects, not only medicine, and in that way, patients will get better. That has become my drive; my purpose; what I want to do with architecture.

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