Brenda Sapitula

20110117 Brenda Sapitula

Age: 22

Hometown: Brandon, MB

What was/is your diagnosis? Retinoblastoma; Osteogenic Fibrosarcoma

What schools did/do you attend? Queen’s University, U of Alberta, U of Manitoba

What is your career goal? My career goal is to be a Speech Language Pathologist

What is your occupation? I’m still a student.

 

Your Cancer experience:

How did you find out you were sick? What led to your diagnosis?

I had colds for about a month, I thought I was just having nasal congestion when I couldn’t breathe through my nose anymore. I went to a walk-in clinic and got tested for strep throat, which obviously I didn’t have. I was sent home with a prescription of antibiotics. After I finished taking the meds, nothing changed. I was even more “congested;” I couldn’t smell anything either. My mom took me to a different clinic and the doctor said I have chronic sinusitis (I had sinusitis the previous year). My mom asked the doctor if I could have an X-ray. When the result came out, the doctor said it looked like I have polyps so she ordered me to have a CT scan then an MRI. MRI confirmed that what they thought as a polyp was actually a tumor.

What year was it? What was your age at the time?

It was the summer of 2009. I was 20-years-old.

In which hospitals were you treated?

I had surgery and radiation treatment at Health Sciences in Winnipeg. I had chemotherapy in Brandon General Hospital.

At what level of education were you at diagnosis?

I just finished my second year of university.

What were your first thoughts when diagnosed?

I wasn’t really scared or shocked when I was diagnosed. I thought I would be fine after surgery and radiation. I though that I don’t have to make such a big deal out of it. I had cancer before I turned one-year-old and I lived through it. So I thought that if I survived the first cancer back in the days where medicine and technology was less advenced than today, I could survive this one too.

How did your family react?

My mom cried, of course; my dad was quiet; and my sister (who was in Edmonton at that time) asked questions. My aunts and uncles talked to me on the phone, telling me that I will be fine. My cousins sent me messages teling me to be brave and that they were praying for me.

How did your friends react?

Some cried and some were speechless. The only thing that changed was that they are more cautious of what kind of activities we could do together so I won’t feel left out. They asked me if I’m feeling ok more often than before

What did your treatment consist of?

I had a 10-hour surgery. After six weeks, I had 33 radiation treatments and after three months had six cycles (three days per cycle) of chemotherapy.

There were a lot of adjustments right after the surgery. I used to be active prior to all of these; I played contact sports, I like being outside and around lots of people. After surgery I couldn’t even walk properly by myself because my head was swollen and I can’t balance myself and my thigh was the harvest site for the skin graft so I had staples on it. It took me two weeks before I could look at myself in the mirror with all the sutures and swelling visible. I was afraid that I wasn’t ready to see the “new” me.

When curiosity got the best of me, I told my family that I will try to look in the mirror and promised them I will not break the mirror no matter what I saw (of course, I was joking with the mirror thing).

During radiation, I noticed that I got sleepy easily. If my treatment is at 9 a.m. and I get home at 10, I would go back to bed immediately. Half of my face was burnt. The radiologist told me that I’m not allowed to be exposed to extreme temperatures. Since I was getting my treatment from November to December, the only time I could go outdoors was when I had to walk from our  house to the car.

I had minor hair loss during radiation but it was behind the ear so it wasn’t obvious.

When it comes to physical and emotional side-effects of this whole thing, nothing beats chemo. It was harder than I thought. I started losing my hair on day 15 and shaved it off right away. Who wants clumps of hair on their pillows, clothes, and food? During the first cycle, I found out that I get bloated and swollen from the hydration and that nothing is more annoying than dry heaving when you’re expecting something to come out. I tried shoving my finger and my toothbrush down my throat in frustration.

It wasn’t long after my first cycle when things got ugly. I kept losing weight every cycle, two or three pounds at least. I was uncomfortable most of the time so I tried to sleep it off. I couldn’t and didn’t want to eat and got dehydrated. I felt depressed because of the hormonal imbalance brought by the chemo drugs. I was constipated, irritated, and frustrated. I would get scared because I thought I was dying or that I couldn’t take it anymore. I had a fair share of passing out and blood transfusions and begging and crying to my oncologists to let me go home.

What is your current medical status?

I’m in remission for almost a year and a half now.

How is life different for you now post diagnosis?

I don’t think that I could go back to what my “normal” activities prior to getting sick so I’m in the process of finding my “new normal” activities. I am still a bit raw emotionally. I still get shaky at certain topics about sickness or life in general.

Socially, I think I’m still the same except sometimes I feel bad for the people who know about my situation because they constantly have to check on me. I feel like I’m becoming a liability to them.

Lastly, I know that I grew stronger spiritually because during the hard times when I couldn’t even do anything to help myself, I held on to my faith the strongest. I counted on people to pray with and for me.

What was the toughest part of your challenge?

I would say that chemo was tough. Because of chemo I wasn’t allowed to do what I loved doing before or go places. What’s tougher is the emotional battle and the guilty feeling of living through it. My grandma was diagnosed and died of cancer when I was having chemo. I was supposed to go back to the Philippines with my parents when she died but because I wasn’t allowed to travel long distances, I didn’t even get to see her. A few months ago, an uncle was also diagnosed with cancer. I tried helping them by talking to my cousins, telling them that their dad will survive like I did. When my uncle didn’t make it, I felt guilty that I survived. I know it’s not fair to feel that way but I also felt, at that time, that the circumstances were not fair. It took me a while to accept things.

What was the best lesson you took away from your challenge?

The best lesson I learned from this experience is that God has a purpose for me and there is a reason why I experienced all of these challenges. Though it might be hard to understand, through suffering there is something good that we could get. Through this challenge, I learned a lot about myself, learned new things, and met people that I will not learn about and meet if it wasn’t for this experience.

What really motivated you to keep going while you were sick?

I almost gave up on myself but what motivated me to keep going were my parents and my sister. I figured that I should continue fighting for them because they don’t deserve the pain that I would cause them if I give up. They’ve been through this same thing when I got cancer before I turned a year old and when I got sick again this time, I know that the best thing I could do for them is to keep fighting. They’re not giving up on me so why should I?

What are your thoughts and feelings about your illness now?  How have they changed since before your diagnosis?

There are times that I would still feel it was a surreal experience. It’s something that I would not want to do all over again, and something that I don’t want anybody to experience. If hate is a strong word, then I hate cancer! I hate being sick, and I hate the pain it brings to families who are affected by it.

What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?

I always read in magazines that berries are good in lowering someone’s risk of getting cancer.

If you did not attend a support group, why?

I haven’t attended a YACC program because I live in Brandon and even though I could attend through teleconference, I was on treatment or was not well enough to attend.

I would attend a support group because it would help me understand that certain feelings are normal after going through this challenge. Also, it would be nice to meet people around the same age who are going through what I experienced and maybe exchange insights about things.

How are you connected with Young Adult Cancer Canada?

I am connected with YACC through the mailing list. Candace Myers (the SLP who follows up with me at CancerCare Winnipeg) introduced me to the group.