Never had I seen a cancer donation campaign as creative as Rav’s. Rav was my student in a Literature class back in UP. He’s rude, he’s a bitch, but he cares for grammar, so that’s fine. (Really he could be a Holden Caulfield from The Catcher in the Rye, one of the novels we read, but like Holden too, he has a tender spot for people (like his small sister) who aren’t phony.
With his permission, I’m sharing here his story, an update in his treatment, and some of the posters his friends (mostly Communication Arts graduates) created to gather love and support.
Personally, I find Piolo Pascual too physically perfect for me to have a crush on (I would rather get attracted to cute nurses sharp-shooting IV lines into my veins and to waiters serving me sinful dishes I’m not really supposed to eat), but I live by the mantra P.I.O.L.O. or “Potah, I Only Live Once!”
Before, I used to think living by mantras is for sissies. But a lot of things have changed. After my 28th birthday, I got a very bad beating from life—I got diagnosed with cancer. It is a very rare form of soft tissue sarcoma called Epithelioid Hemangioendothelioma or EHE for short.
EHE is so rare that only 0.01 percent of the cancer population has it, and it affects about 1 person in every 1,000,000 worldwide. Around 20 cases are diagnosed in the United States every year; there are no records in the Philippines making me the first and only known case. The cause is unknown, and sadly, treatment is very difficult because it responds unpredictably on different strains of chemotherapy, and there is no standard treatment protocol yet. Currently, the goal of treatment is to stabilize tumor growth, and to palliate the patient.
I have tumors in my liver, lungs, spleen, right arms, right shoulder, left finger, left gluteus muscle, and several small ones at the back of my left eye, making my cancer diagnosis already on Stage 4. My left eye has limited movement, and my right arm is now but an accessory as I cannot use it anymore to lift heavy things such as my sariling bangko. I can barely write using my right hand because it causes me quick discomfort. I am in constant pain, and I now rely on pain patches and other oral medications to be able to do things I love and enjoy life and live it to the fullest.
Prior to my diagnosis, I used to be such a big ball of fun, fearless energy. (I am a big guy, one that others would hastily call “chubby.”) Now, people get surprised when they see me as I have gotten very skinny, and bald. I just tell them that I got sick, or that I went through a strict regimen of diet and exercise.
Still, I refuse to let the cancer define me nor defeat me. I am still always ready with a hearty laugh, with a quick wit to boot. Despite the physical constraints of my cancer, I still try my best to do things I used to do, such as reading books, watching movies and TV series, going out for walks, taking a dip in the pool, lounging by the beach, and travelling. Of course, there are restraints now because I cannot dance anymore, nor swim 1000 m every day, nor run 5 km every other day.
The diagnosis has changed my lifeview, as well as my priorities. I aim to create awareness about this very rare form of soft tissue cancer, and involve myself and my friends in our drive to encourage doctors to research more about it. I also want to change people’s attitude toward cancer patients, because not everyone has a grim prognosis. And not because someone has cancer, that’s all he or she is all about, a cancer patient. A simple “You can beat it!” coupled with a smile goes a long way for someone with cancer like me.
Nowadays, I live with a mantra. But I don’t think I’m a sissy. I’m just someone who has realized that life is a fleeting gift that we all should be grateful for and cherish. It also has a way of yelling at your face when you refuse to listen to what it tries to tell you, and I almost got deafened when it screamed right into my ears.
So now, whenever I feel fear, anxiety or worry, I just take a deep breath and remember what my goal and purpose is. After all, P.I.O.L.O. “Potah, I only live once!”
His Singapore trip:
As you all know, I was in Singapore last week to consult with Dr. Richard Quek, an EHE specialist who was recommended by Dr. Andrew Wagner of Dana Farber.
Dr. Quek was a very nice and accommodating doctor; he explained to me what EHE is, and told me that my case is the aggressive type. He also told me that as of now, EHE is not cureable, but there are plenty of ways to treat it so patients can be palliated and live longer.
He recommended that I undergo chemotherapy using Doxil. He said the maximum number of cycles is 8, and scans must be done after every two cycles to see how it’s working.
Dr. Quek also said I shouldn’t have been given carboplatin + etoposide as a chemotheraphy regimen; this was not what they (EHE specialists) would recommend, and it just caused me nerve damage and kidney damage.
Thank you everyone who made this trip possible, to all those who sent their generous donations, to all those who bought the PIOLO t-shirts, to all those who stormed the heavens with prayers and sent love and light my way.
Rav’s treatment is ongoing and, without a doubt, quite expensive, so the group “Rave for Rav” continues to organize events such as a make-up workshop, following a successful benefit gig recently. If you’re interested in donating any amount (in pesos or dollars), you may see details above or here.
Update (22 March 2017):
Rav has passed away.