Tuesday, Manila Day 2, 7/23/13 Intramuros

We went to a historical site in Manila, Fort Santiago in Intramuros. the walled fort that protected the old Manila.  During WWII, Fort Santiago was used as a prison by the Japanese after American General Douglas MacArthur left the Philippines.  It is now a museum for that era.  As soon as we got out of the van, we were hounded by a number of street vendors trying to sell us stuff!  Pretty annoying... Years ago on my first trip to the Philippines, my parents constantly warned me about kidnappings and talking to people on the streets.  That always stuck with me, and has made me leery about meeting the locals in different countries.  Damian was all about experiencing the local culture.  We ventured outside Ft. Santiago and explored Intramuros.  We found that many of the side walks in Intramuros don’t have ramps for wheelchairs.  There were a few ramps, but the conditions on the street are not very friendly to wheelchairs with poorly labeled ramps or unsmooth sidewalks.  I grew tired of the conditions so I asked Damian if he wanted to just ride in the street.  I don’t recommend doing this unless there is unless you have a separate set of eyes watching the traffic for you!  The driving lanes in the Philippines are non existent, so you really need to be aware of EVERYTHING going on!  People try to squeeze their way through traffic, so you have to be aware if your surroundings.  Not the first time, we've done something crazy on our travels! Anyways, as we made our way through the barrio on the street and noticed A LOT of people staring at me in the mAss Kicker Mobile.

Years ago I went to a family reunion on a cruise ship.  I was in a wheel chair at the time and my brother was wheeling me around.  People would not talk directly to me.  They would talk about me directly to my brother right in front of me!  I will never forget “the looks of shame” I got from people on that trip.  This time around, I couldn’t tell if the looks I was getting in the Philippines were looks of shame or curiosity.  I wanted to capture people’s reactions to seeing a guy in a mobility scooter.  Kinda mean, but I wanted people to know what it felt like to be constantly stared at. I asked Damian to follow a few steps behind me and snap a few pictures of people’s reactions to me in the mAss Kicker Mobile.  These looks were very common everywhere I went.  I have learned to ignore them, but seeing people's reactions after I passed by makes me feel uncomfortable.  Check out the link below.

 I like to think I've developed a new type of confidence.  I have a whole new respect for individuals that grow up in cultures where they are seen as "outcasts."  I do realize that people were probably not exposed to something like this, so it is OK to be curious.  I cannot imaging growing up in another part of the world with a physical disability and trying to develop self esteem and a sense of confidence.  People with disabilities are faced with breaking stigmas/ preconceived notions.  

Pictures from Manila Day 2, Intramuros

One thing I've learned on my travels is to be wary of local cooking for fear of GI issues.  We strolled by a bunch of local food stations that smelled AWESOME!  I had to keep myself in check, but the temptation was there!  It was kind of cool going around the streets of Intramuros, but in the back of my mind the wise words of caution from my parents echoed in my head.

We kept ourselves in check because the next day we would be speaking at Ateneo De Manila University on Wednesday.

Stay tuned for the next installment of the blog.  We have more plans to do more international travel next year to break the stigma that tumors/cancer are death sentences!  We would appreciate your feedback and ideas for future activities.  Please leave a comment below.  We want to unite the WORLD in the fight against these diseases!  

Everything was going well until ... it wasn't.

When I was growing up I used to get in trouble if I used any form of the word “suck.” Well mom, some things just suck. Tumors suck, cancer sucks ... suck, suck, suckity suck. Everybody knows it. Up until my own experience, cancer hadn’t touched my life personally. I had only seen it portrayed on tv or in movies. Nothing about my cancer journey was really what I expected. I thought in chemo I would be miserable, vomiting, frail and bed ridden. But thankfully I tolerated it really well. Unusually well, I thought. I thought I would be eager to be done and back in the real world. The latter has proven to be the most difficult part.

It all began with an itch. I wish it was the figurative itch like an itch to travel around the world but instead this is the literal itch. Nonetheless, it was the beginning of an adventure. I’ve been known to take a midday cat nap and one fateful day I woke up scratching my legs and feet like crazy. After the itchiness persisted for more than a week I went to my primary care doctor who kept asking me about a rash that did not exist, did blood work that came back normal and sent me on my way to a dermatologist. Dermatologist’s diagnosis: eczema. Antidote: shorter, cooler showers, less soap and vaseline (lots of vaseline). I felt dirty. I felt gross. And I felt worse.

I only saw that dermatologist and his voodoo medicine twice before I turned 23 and lost my health insurance. Off to fend for myself I began to uncontrollably cough (usually in your face) and once I started it was difficult to stop or catch my breath and each time I would nearly vomit or pass out. I dreaded anything funny because laughing got the coughing fits started too. It became difficult to breathe while laying down flat and I usually had to sleep nestled in the corner of our couch or steal pillows when everyone went to work to create a pillow “teepee” to perch myself upright. I remember sending a text one night that said “I’m afraid this is going to be something I can’t handle or afford.”

Shortly after that text I found myself in the ER, my heart and lungs were surrounded by immediately life threatening amounts of fluid, a huge tumor in my chest and lesions in my liver. I was finally diagnosed with stage IV Primary Mediastinal Large B Cell Non Hodgkin’s Lymphoma. I started chemo immediately and all was going well until ... it wasn’t. I stopped responding to chemo. I was immediately put on salvage chemo (the first of which failed too) and shuffled off to have stem cell transplant. In conjunction with the stem cell transplant I participated in a clinical trial for Bexxar which made me radioactive (but not a superhero, I thought I should at least glow green or something). On 09/09/09 I finally heard the sweet word “remission.”

Since then I’ve been active in starting up the San Diego chapter of the I’m Too Young For This! Cancer Foundation for Young Adults, volunteer at the Leukemia & Lymphoma Society and active with other cancer non profits like Imerman Angels and First Descents. I’m really passionate about connecting with and advocating for young adult cancer survivors.

I thought being a cancer survivor and not a cancer patient would be the easy part. I thought life would continue as normal but now I would have a few extra battle scars and some cool stories. Being a survivor is really just the beginning.