On Turning 29

I turned 29 last Tuesday. While there were other places I could think of where to spend my birthday, I had to spend it at the hospital. I got my infusion on my birthday which is a blessing. Even though I had to spend my birthday at the hospital it only means that I’m blessed because I have meds to be infused. Which is truly a blessing.

All in all my birthday was great. Had lunch with all the doctors I work with. Two of my very close friends came by the hospital to join us. My favorite cousin followed in the afternoon to visit and give me a birthday cake.

I came home from the hospital at around 7:00 p.m. I was surprised to see balloons taped all over the living room. My office mates wrote on some of them. I thought that it was just that. So I looked at it, felt really nice and sat down in the living room. I started to do what I usually do when I get home from the hospital. Check my email, browse some sites.

Around 9 p.m., just before I was thinking of going off to bed, the doorbell rang. The helper opened it and my friends came into the living room, cake in hand singing happy birthday. They surprised me with a visit. My mom also had some food prepared so in hindsight, this was her doing. She and two of my good friends set it all up.

So tired as I was, we celebrated my birthday with some good food, good conversation, laughter and hours of fun spent with friends.

While all of that sounds good, the highlight of my day was the visit from my former highschool teacher who also happened to be the hospital’s chaplain. He gave me a birthday blessing. I also had a chance to catch the 6 p.m. mass.

I thank the lord for 29 wonderful years. Years spent with my family, friends and other people who made a difference. My life has been good so far. I’ve been truly blessed.

I feel old, honestly. Old because I’m also dealing with Pompe and sometimes the I think that for someone who got Pompe at the age of 10, 29 is a pretty long life. I should have died years ago but God found a way to save me. I’m thankful for that.

Over the years miracles have happened in my life to affirm God’s love. Not big miracles but small ones that you won’t notice unless you really take the time to reflect on it.

God, thanks for the 29 years. Thanks for my loving family who’s always been by my side. Thanks for friends who care a lot about me. Thanks for all the blessings you’ve given me. It’s been a great life. I’m hoping it continues for a long time.

Myozyme Is Here!


I received some good news today. One of my doctors sent me a text message saying that the Myozyme shipment has finally arrived at their office. Woohoo!

It’s a week late but still better now than never. We scheduled a Tuesday infusion which is the soonest we can do it. My doctors are only available on that day or Thursday. Tuesday is also my birthday. Eventhough there are other ways or places I’d like to spend my birthday on, the hospital is a good place as any. Why? Well simply because it means I’m getting my infusion on that day. That’s a blessing. That’s a great birthday present.

Now only one more thing is in the way of my infusion. Getting a room! The hospital currently is fully booked that we can’t even reserve a room. They told us to call back Sunday afternoon to see if there’s a room available. I’m crossing my fingers.

A Mixed Week

I’ve had a mixed week. Good and bad. I guess I’d better lead with the bad so that I can finish on a good note.

*The bad*

h3. Myozyme not arriving on time

I followed up with my doctors this week if we were pushing through with the infusion on tuesday, they reported that the Myozyme has been shipped but they don’t think it will arrive’and clear customs on time.

It’s ok. My infusions will most likely be setback a week or so. Still at least it will come.

h3. My friend’s son died

A good friend’s son of mine died. “David Zion Felipe”:http://www.nonofelipe.com/blog/2006/11/15/david-zion-l-felipe-november-12-2006/ died in his mother’s womb one month short of being delivered into this world. It’s a alwaya a tradgedy to lose a child.

My friends Nono and Tuna are going through a tough time and I sincerely pray that they get over the loss of their child as qucikly as they can. Not to forget their son but to move on with their lives. May the Lord not allow them to dwell upon this loss. Sometimes we can’t understand why things like this happen. We can only trust that there’s a reason for this.

h3. Our story didn’t win

Awhile back I “blogged”:http://www.fightpompe.com/article/108/the-countdown-begins about a contest that my friend and I entered. We submitted a story that we worked on together. Well I’m sad to say we didn’t win. Not even an honorable mention. It’s ok. The only reason I’m sad we didn’t win is that because the winner gets published. However somehow, someway we’ll get this book published.

h3. My Powerbook’s charger is busted

My charger just suddenly acted up last Friday. It didn’t want to charge my Powerbook. It only started to charge when you moved the wire. Then after awhile my aide noticed that the charger was really really hot and the rubber that connected the wire to the charger melted already.

I called my dealer to check if it can be replaced under warranty. I also asked if they had chargers in stock. Even if they could replace it under warranty it would take sometime. Time that I didn’t have. A new charger would set me back Php 8,500 or roughly $ 170. That’s a lot..

Luckily I was able to borrow a spare charger from a friend. I’ll just have to wait to know if Apple will replace my charger.

*On to the good things…*

h3. Myozyme is coming

While I wrote above that it’s bad that Myozyme won’t make it on time for the scheduled infusion date, it’s still good that it was shipped and that it will eventually get here. That’s still great news. I’m truly grateful about that.

h3. A business transaction pushed through

I was able to close a business transaction this week. While it was only half of what I was hoping for, half is still better than none. God I pray for more opportunities like this. I really need to start making more so I can save for the future.

h3. The Pac Man Won

Manny “The Pac Man” Pacquiao won over Erik “El Terrible” Morales in their third and final match. Much buzz was going around prior to the fight. People said that this will be a tough bout for both. Manny and Erik were in great condition and the fight was expected to be an epic one.

After all is said and done, Manny demolished Erik in 3 rounds. Erik fought valiantly. He’s a true warrior. However Erik was just outboxed this time. Manny was the better fighter today. He was quicker, stronger and better prepared.

This deserves an entire post all to itself which I’ll do tom.

*All things considered*

As with most things in life, good and bad are all mixed in together. You can’t have good all the time. All things considered the past week was ok.

A Good Weekend

This weekend has been a good one. Although I did not get to accomplish some of the things I had to do for work but I think I really needed a break.

I spent Saturday morning watching some tv shows I haven’t seen. I caught up on the latest season of “The O.C.”. At first I never thought I’d like this show but having seen the first season last year, I got hooked somehow. This season seems to be interesting. I also watched the latest episode of “Grey’s Anatomy”. Seriously, this is one of the best shows on air today. The writing is great. It’s on its third season and I’m still as interested if not more since the first time I watched it. In contrast with Desperate Housewives. I liked it at first but now, not so much.. Don’t know why. I just stopped watching it.

In the afternoon I ended up watching the World Pool Championships’ Quarter Finals and Semi Finals. Our very own Ronato Alcano powered through to make it to the finals.

I really wanted to get out of the house so I asked my friend Nes if he wanted to go out in the evening. He said they had a GK meeting in the afternoon but for me to join them for dinner afterwards. I said sure. I met them at Old Spaghetti House in Makati. I joined him and the other members of the GK Committee of our SFC chapter. We had dinner and set up an impromptu poker game at Ton’s house after. They had called some of our friends and asked if they wanted to play poker. So we did.

Now I’m not really a poker player. I played it several times in the past but it was the company I was after. We played poker till about 1:30 a.m. at which I decided to call it a night. I went home ahead of them and I found out today that they played till 3 a.m.

Sunday was another lazy day. I spent a the morning and a good part of the afternoon chatting with some friends. Carlo and I made a “video”:http://www.theaftermac.com/macbook-pros-isight-plus-one/ to test out his Macbook Pro and an external iSight. Suffice to say we had nothing better to do and that’s why we did that.

I also chatted a bit with Eleanor. I had a very interesting conversation with her.

The rest of the afternoon was spent watching the finals of the World Pool Championships and I’m happy to say that Ronato Alcano brought pride to the Philippines by bagging the championship in an exciting match. He shot a 1 and 9 ball combination to win the tournament.

The highlight of my weekend was going to mass with my whole family. We finally after a long time were able to hear mass together. I usually didn’t go to the 8 p.m. evening mass because it was easier for me to go to an 11 a.m. mass in the club in front of our house. However this time I thought that I really wanted to hear mass with my mom, brother and dad at the 8 p.m mass in the church near our house. My dad serves at that mass and that’s why he doesn’t go to the 11 a.m. mass. My brother also hears mass with his girlfriend usually on Saturday evenings so he sometimes doesn’t go to the 11 a.m. or 8 p.m mass. Tonight we all went together.

It’s been awhile since I’ve been to that church. I was surprised to see that they installed air conditioners and sealed of the church. I’m sure this will be really handy during summer.

I prayed for several people. My family and friends who needed prayers. I hope that God hears my prayers for them and grant what’s best for all.

I guess it’s not really an exciting weekend compared to other people’s weekends but It was really nice for me.

Ben Franklin’s Advice

Carlo posted “this”:http://www.nargalzius.com/blog/archives/2006/11/2006_11_05_1131AM.php on his blog. It’s a pretty funny story regarding one of America’s and perhaps the world’s most notable men in history.

Ben Franklin wrote to his friend to advice him on his sexual affairs. Needless to say I did not expect the advice that he gave. It’s quite funny at the same time sort of true.

At the end of the day, Ben still adviced his friend to marry. Which I think is the correct thing to do. However, do not marry just to satisfy that urge. Marry because you love the person.

That being said.. Ben’s quite a funny guy.

My Wish List

My friends “Carlo”:http://www.nargalzius.com/blog and “Nono”:http://www.nonofelipe.com/blog started their own respective Christmas wish lists. So I thought I’d follow suit and start my own. Not that I expect it to come true but hey, you never know. I’ve modified it a bit. This will be my *Christmas and Birthday Wish List*. Sometimes it’s just good to list dreams and wishes down. Maybe one day you can look back at it and see if it came true.

h2. My Super Improbable Will Most Likely Not Come True But Can’t Hurt To Wish For List

* Peace on earth. I pray that all the war and strife that’s going on in the world will end. Now!
* Find a cure and treatment for all diseases known to Man.
* End Poverty
* For everyone to just get along. C’mon people can’t we just love and respect each other. Our differences as well as similarities.

h2. My It Can Happen Although It Will Take A Miracle List

* Every Pompe patient all over the world receive Myozyme. It’s a really high mountain to climb but I think it can be done.
* I win the lottery or someone to give me a million dollars. Hey, I didn’t say it will come true but it can. Right?!? Ok so maybe not a big chance..
* I’ll be able to get off my Bi-Pap and not have to use it anymore. I’d be really happy to give away my Bi-Pap to a hospital or someone who needs it.
* I’ll be able to get off my Wheelchair and start walking again. Now wouldn’t that be something?
* “PSOD”:http://www.psod.org.ph reaches it’s goal of raising the targetted amount for the endowment fund in less than 5 years.
* To Find someone who loves me and someone I love back as well. Yes, in a romantic sense. I have people who love in a friend and family way 🙂

h2. My Selfish And Materialistic Wish List.

* A Studio or 1br Condo or Apartment. Why? I just think at my age I should be making investments now that will help ensure my financial situation in the future. I’d like to have this rented out. It’s part of my plan to build assets. Getting old is expensive.
* A “MacBook Pro”:http://www.apple.com/macbookpro. My Powerbook is getting old and outdated… But really.. I just want one coz I’m just love it. That’s really just it.
* An “iBot Mobility System”:http://www.ibotnow.com go visit the web site and you’ll see why I want this… Trust me…
* “Apple Cinema Display”:http://www.apple.com/displays/. The Monitor of choice for Mac guys like me.

h2. My Selfish And Materialistic but A Bit More Realistic Wish List

* The “Macally Icekey”:http://www.macally.com/spec/usb/input_device/icekey.html keyboard. Saw this in a video… This keyboard looks sweet.
* “Apple Wirless Mighty Mouse”:http://www.apple.com/mightymouse/ I have the old Apple Bluetooth mouse and it looks like the Mighty Mouse will be a worthy upgrade. I just really hate cables and want to have as few of them as possible.

h2. My Realistic Wish List That I’ll Be Happy To Get Even If I Don’t Get The Others

* For the important people in my life to remember me on my birthday and christmas.
* A kiss and a warm hug from the above mentioned people.
* To spend those days with my family and people that really matter.

So there.. Most of this might not come true but like I said, I’d be happy with the last three wishes.

Chat With Mark

I just had a pleasant chat with Mark from Genzyme yesterday. No, it wasn’t about Genzyme or Myozyme. It was just a pleasant friendly conversation. He recently got an “iMac”:http://www.apple.com/imac/ and wanted to try doing video chat.

I’ve exchanged emails with Mark through the course of this year but this was the first time I was able to speak with him and it was great that the first time was through a video chat. It was almost as great as meeting him in person.

I love technology but what I love about it the most is the ability to change and improve our lives and how we do things. 10 years ago it was almost unheard of that someone can do a video chat with adequate voice and video quality just using your consumer laptop and web camera. Now it’s the norm. It’s great that someone from Manila can be instantly connected to someone in Boston at the flick of the switch without costing you an arm and a leg. It’s great how this technology makes the world such a small place. It’s great how technology brings people closer and keeps relationships alive.

I’m glad to have had my conversation with Mark. It’s certainly awesome to have a face associated with a name and a person that you correspond to. Especially when that someone is making a world of difference in your life by helping you get medicine that will extend it.

23rd Infusion

I’m here posting this entry just hours after I finished my 23rd infusion. This infusion is special because it marks my last infusion on the Expanded Access Program (EAP). Since Myozyme has been approved by the FDA, Genzyme has been transitioning EAP participants to other programs. Some patients have gone on to have their treatments covered by their insurance companies while there are some like me who have to apply to the ICAP or International Charity Access Program.

The Philippines does not have the same insurance industry as the U.S. or Europe. Reimbursements for treatments like this is unheard of here. Heck, most people here don’t have health insurance much less something that can cover something as expensive as Myozyme.

The ICAP aims to help get treatment to patients such as I who have no means as of yet to continue treatments as expensive as this. We’ve applied for the ICAP and have gotten a 3 month grant for it.

The medicine isn’t here yet and the papers are still being worked out. Hopefully it arrives on time. Pray it arrives on time for the next infusion.

As for the actual infusion session it was pretty much the same as most. Nothing eventful. Oh, except waking up to have a cute resident come in and look at me before the infusions started. It sucks to be in a situation like that since your first impression is literally down the drain. There’s nothing as appealing as a newly woken person with all the things that are associated with a sleepless night. More on that later. Suffice to say.. I don’t think I made a good impression to that resident.

I did have a sleepless night because my stomach was painful. I finally couldn’t take it anymore and had to go to the bathroom at 4 a.m. and see if that can solve the stomach problem. Apparently it did.

So I fell back to sleep around 6 a.m. and got around only 2 hours of sleep.

Apart from that, the day went well. My lead doctor couldn’t come. She’s on a trip to Spain. So Dr. Lynn substituted for her. Of course I have my regular doctor and talking buddy Dr. Lani. I think over the course of the year I’ve been on treatment we’ve gotten to know each other well due to our conversations. Most of the time light, sometimes serious but always enjoyable. I really appreciate those conversations.

My regular nurse couldn’t make it as well so it was for two sessions in a row Carolle.

Oh, I had a bigger room this time since the regular rooms we use aren’t available. I really thought this room would be better since it was more expensive. Honestly it’s not. It’s just bigger. Most of the space you don’t really need. You just have a bigger hallway with a lot more cabinets. If you’re staying overnight, you just don’t need that extra closet space…

Here’s to the 23rd infusion and coincidentally I keep using Michael Jordan whenever I give my talks and I know end the EAP with his number. How cool is that?

Claiming It By Faith

We’re pushing through with the infusion on Tuesday. What’s the significance of that? Well I only have enough Myozyme for one more infusion. There’s some that’s on the way but it’s not here yet nor do I know when it will be here.

I’ve talked to my doctors about this. We even contemplated on postponing the infusion for another week to give more time for the new batch of Myozyme to arrive. In the end my doctors decided to push through with it.

I guess that’s the sign that I was asking for. I’m just claiming it by faith. Faith in God. Faith in the fact that God will do his best to make sure it arrives on time. He hasn’t let me down. So I claim it by faith.

It will arrive.. Oh yes, it will arrive.

Searching For Greatness

I’m turning 29 in a few weeks… Boy, 29… I know people will kill me when they read this but for me, 29 seems really old. Not just because of the physical years but I feel old simply because at 29, what do I have to show for it? Seriously…

I’m turning 29 in a few weeks… I’m not married, not in a serious relationship, not rich, not even highly accomplished. To add to that I’m really at a crossroads on what I’m going to do with my life.

The past year has been really good to me. I’m almost a year into my treatments. My condition has not deteriorated and I even think it has improved slightly. My family is good, they’re healthy and doing ok. My family has had it’s share of losses this year, notably the passing of my grandfather but all in all the year has been good.

So why o’ why am I feeling this way? I guess it’s because I’m still searching for greatness….

I’ve always believed that we should use our lives to do something great. I was thinking about writing this entry a few weeks back when I read “Gabe’s Post”:http://gabemercado.multiply.com/journal/item/1 on his blog. He mentioned that he was also searching for something great to do. He mentioned that Jesus was 33 when he started his public life, St. Ignatius of Loyola was 33 when he wrote the spiritual exercises, etc.. I’m 4 years away of being 33 so there’s ample time to think about something great to do.

I’ve always imagined that I’d do something life changing. Not just for me but for others as well. I hope I get to do it.