I am Sick, but I'll always be my same KCAT no matter what…
In October 15, 2004, I was diagnosed with a very rare genetic disorder called Neurofibromatosis Type 2 (NF2) and the main manifestation of the condition is the development of symmetric, non-malignant brain tumors in the region of the cranial nerve VIII, which is the auditory-vestibular nerve that transmits sensory information from the inner ear to the brain. Later on, we found out that I have the type 1 (NF1) as well.
My Neurosurgeon, Dr. Willy Lopez, warned us that since I have a lot of
tumors – mostly brain tumors, there is a possibility that I might turn
deaf someday. Okay. It didn’t frighten nor got me worried; not a bit. If
it’s bound to happen, it will just happen. One sleepless night when it
all dawned in me, I cried. I cried because I felt like I need to; because
I think that’s the normal reaction and what’s supposed to be. But truthfully, I was not really sure why I was crying so I wiped my tears and stopped.
Ummm... Just because.
But I never questioned God WHY because I know from the start that everything has a reason and there’s got to be a reason for this. There is a reason. I’ll know the answer in time – in God’s time. After that one night, I continued living my life the way it was, should be and how I want it to be. My condition never hindered me from am doing or what I wanted to do.
In January 2005, I underwent an open brain surgery but it was terminated because of the unsafe dura opening. I called it my open-close brain surgery, which left me with an undercut hairstyle. How cool is that? Haha!
And so I continued living my life as it is. I underwent Stereotactic Radio Surgery (SRS) in June 2005 to treat my 3 brain tumors. It was decreased in size to prevent it from growing and could cause more damage.
My treated tumors were on its swelling stage few weeks after my SRS. That went
on for 6 months; and in that six months I continuously had headaches, double
vision, poor balance, until I became so weak and my hearing was fading rapidly.
I was in and out of the hospital until I was confined from October25 - Decembe
22. I underwent a VP shunting because I almost had a hydrocephalus from the
stress that that the severe pain gave my head. And then I suddenly got so weak.
The left part of my body was almost paralyzed and numb. My facial muscles won’t move and the right side feels numb. I can’t swallow properly and I was fed through a (NGT) tube. I didn’t have double vision anymore, but I have a very poor vision.
I was supposed to undergo thoracic surgery for the insertion of tube to drain out the pus in my lungs caused by pneumonia. But God is great, I was already in the operating room, the nurses already prepared but when they checked the scans again, my thoracic surgeon declined the procedure, the pus were gone. I was wheeled back in my room.
After almost two months in the hospital bed, I begged my doctor to discharge me. I didn’t want to spend Christmas in my hospital room, away from my family and friends. Five days before Christmas I was allowed to go home. I went home with the tube on my nose down to my stomach for my liquefied food intake, since I still had difficulty in swallowing solid foods.
In January 2006, I welcomed the New Year with a new world, a world without sound. Silence. When my mom talked to me and broke the news that I won’t be able to use my hearing aid anymore, I simply replied with an “OK” and just accepted it. I was not sure if I was just in denial I didn’t think about it that much.
Until Holy Week of that year, I had an anxiety attack because everything dawned in me that I was really sick, that I could not move freely that I was so weak. My eyes were so blurry; I could not chew and swallow my food properly. I was already completely deaf. I could not sleep, I wanted the world to stop and wait for me. I felt so useless. I was sad, weak and couldn’t sleep. We even sought the help of a psychiatrist to help calm me down with medicines.
I was waiting for Easter Sunday, but I have no idea why. I just kept on reminding everyone and chanting, “On Sunday. On Sunday.” I just want it to be Sunday, but why? I got to be out of my mind. It felt like the world is moving so fast and I wanted it to stop or slow and wait for me, but of
course that won’t happen. I want to scream, “Wait for me world!” I wanted to
give up. It felt like I was just waiting for death to come after me. And then
Monday after Easter Sunday, a miracle happened again.I felt better – Spiritually
and Emotionally. During breakfast, I told my mom, “We will get better. (My mom
has Systematic Lupus Erythematosus) I will do everything that I can despite of
my disability; everything has a reason, LIFE MUST GO ON.” She asked me if I
was saying that just to please her and because she told me to. No, this is what
I want. I want to do what I want with everything that I can.. The world won’t
wait for me; I have to live with the world because I am still alive. I felt really
grateful for my life.
I've decided to continue living my life; the way it should be and how I want it to be.
I can’t but I CAN. There are lots of things I cannot do anymore, but there are also a lot of things I can still do. If I can, then I would. I’m sick. I’m Deaf. So what? I’m not really bothered by it anymore. There’s still a chance that I’ll be able to move my left body and walk again. As for my hearing, I have fully accepted the fact that I’m already deaf and there’s really no an assurance that I would be able to hear again. When aperson with NF like me becomes deaf (since the auditory nerve was damaged already because of the tumor), it really isn’t possible to restore the hearing. I accepted it, but still I never lose hope. I wasn’t sure what that is. I just know there could be even a little hope, I just don’t know what that is.
Deaf forever? Sounds scary huh? Not really, or maybe I just don’t think about it that much. Actually, I don’t really think about the things I can’t do, instead I focus on the things I can and would do.
So my life continues. Therapies. Check-ups. MRIs.
From then on, I, together with my family and friends, just let each day
went by. I started to have my regular rehabilitation at the Philippine
Orthopedic Center to regain my strength. I am left-handed and my
left arm, hand and fingers won’t move, I practiced using my right
hand and went back exploring my craft in artworks through my computer, and did
self- study thru the internet until I developed my skills in graphic designs again.
In no time, I was back with going out with my friends and family. I was back with my “gimikera” self. Gimikera on wheels, this time. Haha! And of course, you can always see me in front of the computer; designing, blogging, chatting with my friends and surfing the internet. Just like what I used to do. Life goes on.
In August 2007, my mom told me to do some research on the internet regarding my vertigo because after all the therapy / rehabilitation I’ve been having, why is it that I cannot walk yet? We wondered. Maybe it’s because of my poor balance. I've already regain some strength, my facial muscles almost improved, I can already swallow solid foods, but I still can't walk. I can't even stand without assistance. So one night I decided to do some research. I used the keywords: neurofibromatosis, hearing loss, tinnitus, vertigo, and I got curious about cochlear implant. Though I know that cochlear implant doesn't really work with an NF patient. I was just curious , that's all. Then more than what I was looking for, I stumbled upon Auditory Brainstem Implant (ABI). I remembered what my ENT doctor, Dr. Elmo Lago, told us after I became completely deaf: “Never lose hope, hanggang may tenga, may pag-asa” (As long as you have an ear, there’s hope). And incidentally stumbling upon ABI is a big HOPE! ABI is a hearing device especially designed for NF2 patients since cochlear implant won’t work with a damage auditory nerve due to
tumors. I did a further research on ABI because I want it
so bad! I really really want it! The sad part is, it is so
expensive and we won’t be able to afford it. It’s shinning
shimmering 1 Million Pesos (kaching-kaching), where
are we going to get that huge amount? But I want it!
Nothing is impossible with God, you just have to pray
hard and of course do the best you can. I kept on
thinking of ways on how to earn and raise funds. I’ll
raise funds, but how? Then I told my mom, let’s sell shirts! “I’ll design it!” In that way, I’m not only selling shirts, but also sharing my talent. We started with 200 shirts. The demand increased to 500 shirts, 1,000, and so on. My hEAR Campaign and my story was even caught a couple of media’s attention. I was featured in some local shows. God sent me a lot of blessings and He sent me to be a blessing to others as well; I got to inspire a lot of people.
While I was doing my hEAR campaign, I was already having my assessment tests for ABI. I had an Auditory Brainstem Response (ABR) testing and the result was positive. My auditory nerve is still functioning. Then I had Audiometric Test and my auditory nerve is still responding, but with a very high pitch sound, But still, that means that the nerve is alive and kicking! Dr. Derald Brackman of House Ear Institute in the US offered to review my case and gave his medical assessment when my mom emailed him regarding ABI (he is one of the principal authors of ABI and also manages NF patients), so my mom send my medical records to him. His opinion was to have me undergo the Promontory Stimulation Test; this is a clinical assessment whether the patient could benefit from a Cochlear Implant (CI). CI is a less invasive surgery since it's done just in the ear and not in the brain unlike ABI. According to him, my tumors are already stable following the radio-surgery treatment in 2005 and he can see a possible viable nerves based from my medical data. If the promontory stimulation test turns out to be positive, CI could be considered, and it was indeed positive! Then I had my MRI again to double check if my tumors are really stable. And it was!
I had my cochlear implantation on April 8, 2008, which was done by Dr. Charlotte Chiong, a fairy godmother with no magic wand or pixie dust, an angel with no wings; just medical knives & a heart of gold.
I heard my first sound on May 16, 2008, it started with a ‘tuk’ sound and my brain
is continuously adapting to the sound of the environment. I can now say, “I can
already hear the noise of the world!” Yes, I hear every sound already, I still can’t
understand it clearly though – just environmental sounds. It’s alright because
it’s way better than not hearing at all, right? But there are times that I can
recognize some syllables and I’m so thrilled every time.
In April 2011, a progressive tumor is causing my right eye to bulge out and I underwent a major head surgery to remove it and save my eye.
During those times, the only problem that we encountered is lack of money for the medical expenses of the surgery and hospitalization fees. Albeit this predicament, there is always a way. All we have to do is to continuously move forward with faith in our hearts and let God lead the steps. And as what my Mom claims: “God is making it easier for us this time.” We never cease to be overwhelmed with all the assistance that we have been receiving through these God-sent angels from different places, of different ages, statures, and races.
On the day of the surgery, I have come prepared with my biggest weapon: FAITH.
Faith in myself , Faith in the people around me and the biggest FAITH IN GOD and
it was a success! I immediately gained my consciousness right after being wheeled
out of the operating room. I did not feel a single pain nor any discomfort after. My
head did not hurt. I did not feel dizziness, heaviness and I did not vomit I was
discharged from the hospital in less than a week, sooner than everyone expected.
As 2016 came. I felt like something’s going to happen. My condition was becoming worse. I was getting weaker. My vision was not good. I find it hard to swallow my food. I got tired easily. I often got headache and nerve pain. I was getting skinnier.
In April 2016, II was admitted in the hospital. I was really so weak and my head was hurting, the headaches was not as painful as before (the VP Shunt helped) but it doesn’t go away. My CT scan showed 3 progressive tumors and it has to be removed immediately. 6 cm tumor in my brain was removed successfully on April 11, 2016 and amazing things has been happening since then because God is in control. READ MY AMAZING STORY.
2 months after, in June 20016, I underwent another cranial surgery to remove
the tumor on my optic wall and titanium plates and titanium mesh were used
to reconstruct the affected bones. I had the fastest recovery after the operation.
It was double the awesomeness of the brain surgery that I had before that.
You can read about my very successful surgery here.
Neurofibromatosis is a continuing battle. We may never know when and if the tumors will strike again. There are still a lot to "get better” from. Besides, why do I have to worry? Worrying would just add to our burden. What I need to do now is to be strong and find ways to raise funds for my medical expenses. God is with me. His will be done.
Blessings came pouring. In 2010, I was chosen as one of the 7 finalist in the Cebuana Lhuillier’s Search for Happiest Pinoy. In the same year, I became the grand winner of Pagbabago blog contest sponsored by Nuffnang and Goldilocks. I have been invited to render a talk and inspire more people in different events and did a couple of TV, broadsheet and radio interview. To share all these blessings from God, I launched my “MAY Birthday Project” in 2007, where I ask my friends hospital necessities and toys a birthday gifts and distribute it to children’s & neurosurgery wards at Philippine General Hospital. It has been going on for 7 years now.
From July 2010 to June 2014, I had a bi-weekly (every other Monday) column in Manila
Bulletin, Students & Campuses section where I write about my experiences and
endeavors and share my blessings, advocacy and outlook in life.
I became an author in November 2015. My dream of publishing a book came true; I made it come true. I compiled a couple of my writings for the past 4 years when I had a column at Manila Bulletin. In this way, I will be able to sustain my medical needs, treatments, tests and maintenance; sustaining my essential needs.
The proceeds of the book will help us sustain my endless medical needs. This is a book about the beauty of life: By Kcat. For Kcat. I believe that with this book, I will be able to help and inspire you while helping me reach a better life.
In 2009, I created Neurofibromatosis Friends (NFF) Philippines – a small support group composed of Filipinos with NF. When I was diagnosed with NF,
I tried searching for NF support groups here in the country. We are often judged based on our physical appearance due to visible manifestations of NF; therefore, one of our goals is public awareness – to disseminate information that our condition is not contagious in contrary to how it appears to be. With this, we are not only able to inform but also uplift ourselves, making each other feel that we belong, that despite of our condition, we can contribute something to the betterment of our society. As we, altogether, learn from each other’s experiences and help each become a better person.
I may not excel in anything, but I have achieved a lot. I am able to touch lives. I am able to share my talents. I am able to bring joy to people’s hearts. That after
Seeing my condition and hearing about my story, some people would tell themselves, "If Kcat can despite her condition, I can do it too because I can still hear, see clearly, walk by myself and a lot more."
Yes, always put in mind that you are all still luckier than I am, and I'm happy despite everything.
Most importantly, I know how to live with gratitude, contentment, happiness and courage in the face of many struggles and challenges. I am disabled, but because of my FAITH, I am surely, definitely and undoubtedly able!
The only thing that's instant in the world are foods, gadgets and appliances, but
life isn’t. We have to live day by day. All I know is I’ll get better. I'm getting better; little by little, one at a time. The best way to live life is enjoy it, and I'm enjoying because life is the reason.
And so my life goes on…
LIVING LIFE TO THE FULLEST SINCE 1983
Cebuana Lhuillier Insurance Solutions Search for Happiest Pinoy - Finalist
Ulirang Mandaleño - Outstanding Person with Disability
Don Bosco School Silver Awardee - Outstanding Past Pupil (Alumni)
While there’s life, there’s hope; and while there is hope, there is life.
No matter what