Bayanihan

"By this everyone will know that you are my disciples, if you have love for one another." (John 13:35)
 
It seemed as if Edison and I were fighting something new each week. By Week 4, it was vomiting spells! It was particularly frustrating for me, as I tried so hard to stick to the routine that I've set up for him beginning on Week 3. I was so proud of the progress that we've made: I've finally come to terms with us using the feeding tube four weeks earlier than anticipated. As long as we were able to maintain his schedule - Edison taking 8 cans of formula - then he'd be able to maintain his weight.

But just like everything else since we'd started the battle, we were yet again taken into a surprise minefield. The very first time he had to run to the sink and vomited what seemed like 2 whole cans of formula, I just about crumpled to the ground. For breastfeeding mothers, it's the equivalent of you watching 16 ounces of your precious breast milk that you've worked so hard to pump, accidentally getting knocked all over the kitchen floor! Just horrifying!

Watching Edison's suffering through Weeks 4 and 5 never got easier to bear. With a new strain of cold/cough, his gag reflex working against him when he uses the "magic mouthwash," and chemo side effects finally catching up to him, the vomiting spells just kept coming! You would think that after a while, I'd be able to tune out his helpless heaving. No. In a way, we really were in the same boat: he, having no control over his body, and I, wanting to do anything to make him feel better, but ending up feeling helpless just the same. "One day at a time," I would whisper to him often when days seemed to drag on longer, and the end was nowhere near in sight.

By the end of Week 5, Edison only had one more chemo session and 13 radiation sessions left. With our friends coming over that weekend, it truly felt like a 7th inning stretch! Almost there!!!

And when it rains, it pours... Since then, more blessings were showered upon us! Russell, my younger brother, who lives in Seattle, created, in support of Edison, a gofundme account, which generated a whole new set of well wishers - and from all over the world! It has definitely boosted Edison's morale!

Kuya Edsel, Edison's older brother, is also planning a local fundraiser in a couple of months. We are just truly overwhelmed by all this love! I am in awe with deep gratitude that even though we live far away from one another, we still have the spirit of bayanihan within us. ("Bayanihan" refers to the spirit of communal unity, work and cooperation to achieve a particular goal. - The Bayanihan Spirit)

We will forever be indebted to your love and kindness. Maraming salamat po! (Thank you very much!)#TeamThrive

Treatment Countdown:
Chemo sessions done for now - yay!
Radiation sessions: 28 down... 7 to go!

More prayers please! 

Footprints in the Sand

One night I dreamed I was walking along the beach with the Lord
Scenes from my life flashed across the sky,
In each, I noticed footprints in the sand.
Sometimes there were two sets of footprints;
other times there was only one.

During the lowest times of my life
I could see only one set of footprints,
so I said, "Lord, you promised me,
that you would walk with me always.
Why, when I have needed you most would you leave me?"

The Lord replied, "My precious child,
I love you and would never leave you.
The times when you have seen only one set of footprints,
it was then that I carried you."

"Guess what I found," Edison told me a couple of months ago. To say that May 2017 was a stressful time is an understatement: Edison's cancer diagnosis had just been confirmed; I was wrapping up my first year of teaching; Edward was studying for his Freshman finals; Alison was preparing for her 8th Grade graduation; and we were at the final stages of our move to Tracy.

"What?" I asked curiously.

Edison then showed me a worn out business card-sized copy of "Footprints in the Sand." I had given it to him almost two decades ago when we were still dating. "It's my favorite," he said.

"Oh, wow!" I half-whispered in astonishment, as I examined the card. "Yeah, it's one of my favorites too."  

Fast forward to today... who would have thought that Edison finding the beautiful poem was merely a gentle reminder for what was ahead of us then? 

First of all, praise and thanksgiving be to God that we pulled off our cruise to Mexico! It served as the anchor by which we were able to escape the craze of May/early June and the struggle of Edison's treatment ahead, even for but a brief moment in time.

 

On the first day of his treatment, Edison's optimism was at its all-time high! 

Screenshot of Edison's Facebook post; he got tons of well wishes!

Two days later, we were propelled into the horrors of the treatment phase of our journey! Edison got a feeding tube in his stomach, an outpatient procedure that added two weeks to him needing assistance in making sure it doesn't get infected. (We were just about to finish making sure that his port placement was infection-free!) After 7 sessions of radiation, the insides of Edison's cheeks developed sores, which made it very painful for him to even put food in his mouth. We started using his feeding tube 4 weeks earlier than anticipated!

I expressed my concern to the radiation oncologist. He said he wasn't surprised that Edison couldn't eat and swallow only after the second week of treatment. He said that Edison was thin to begin with, and didn't have any fat in his neck to take the radiation, so it went straight to the his mouth and throat. The doctor looked at the back of his throat and said it looked like a bad sun burn! 

However, while we were already using the feeding tube, Edison still needed to practice swallowing, lest he lose muscle function. Watching him wince in pain as he swallowed water or Ensure was always tough for me to watch. Fatigue had also become permanent. He once described it to me: "You know when you're so tired by the end of a work day? Then you sleep it off, you wake up, and you feel better? For me, even after I sleep it off, I wake up and I still feel the same."  My heart bled for him. I couldn't imagine feeling so trapped in your own body like that!

By the third week, he expressed feeling the "lowest of the low," battling a cold that aggravated the radiation side effects even more. I tried to set up a routine for him, to make sure that he didn't spend a lot of time just lying down, adding to his depressed state. 

A typical day for Edison on non-chemo days: We pray first thing in the morning, and then I give him anti-nausea and pain medication. I let him go back to sleep, so that after an hour, the meds will have kicked in and he is ready to start his day: magic mouth wash (prescribed by his radiation oncologist) + Biotene mouth wash + Biotene toothpaste, all to help with his dry mouth; family meditation in our backyard; first feeding (two 250 mL casein-soy protein blend); morning walk; and jaw exercises. At noon, we have the second feeding of the day, shower, oral care routine, then off to radiation in Modesto. We spend time with Edward and Alison after radiation: afternoon walks, board games, movies, tv shows, etc. The following: feeding, oral care routine, and jaw exercises - is done two more times, once in the late afternoon and finally late at night. In between all this, Edison would take naps, watch his favorite tv shows, correspond with friends, and keep phone appointments with doctors. On Fridays, a Eucharistic Minister from our new parish comes to our home and gives him Communion. 

I think dark days exist so that even the slightest hint of light could give us a glimmer of hope... a ray of light would be considered a miracle! As our friends' wedding approached, prayers for Edison's strength and stamina were a tall order. But alas, from Thursday's (7/6) wedding rehearsal, all the way to Edison's dance numbers on Saturday's (7/8) wedding, his strength and stamina held up! It was nothing short of a miracle!

Edison's Treatment Countdown as of today:

Chemotherapy - 4 DOWN... 2 to go!

Radiation - 16 DOWN... 19 to go!

I look at the "16 days down" for radiation, and I feel that there have definitely been more bad days than good. "Footprints in the Sand" has never felt more real! I honestly do not know how we get through each day... and then I am reminded of this beautiful poem and I think, "Jesus! Of course it's Jesus who's carrying us right now! There is no other explanation..."

To those of you who have continued to pray for us, cheer us up, visit us, bring us healthy food, and keep us company in this journey, may the picture I've painted through this blog update show you why I appreciate all that you do for our family! Edison and I will forever be grateful for the love that you've shown us during such a trying time for us. Jesus has been carrying us through you! #TeamThrive