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|| Thursday, October 27, 2005 ||O, BEAUTIFUL AFFLICTION
O Beautiful Affliction
This mortal wounding bringing me to life again
In suffering there’s healing
This darkness revealing
Silence speaking volumes to my soul
O Beautiful Affliction
Blessed brokenness that makes me whole
- John Fischer
(thank you Rocks, for sharing to me this poem)
I know that Pyro is too young to even appreciate the truth in this poem... but am not talking about his pain. I'm referring to the painful truth of our mortality, and how, suddenly, life has become all the more precious and meaningful and magical.
Suddenly, time is not just gold, it's titanium and diamonds.
Cancer would always be a terribly ugly word. But if it has any rewards at all, it's the lesson of making every moment count.
Pyro is back to his weird, happy self. Imagine devouring rice with paksiw na isda and ginataang liswik for sabaw (yes, combined!). He's demanding and noisy and cute and hasn't vomited since yesterday afternoon. He's also enjoying the Chirstmas tree and lights in the house immensely.
And the flicker of hope that we can still have a happy Christmas is now a flame.
|| Tuesday, October 25, 2005 ||THE FIRST CHEMO CYCLE ENDS
His chemo cycle consists of 3 drugs... Bleomycin, Cisplatin and Etoposide and lots of hydration and anti-nausea drug (one of which, Py was allergic to and almost killed Py last Friday).
He gets discharged today.
Hopefully he'd eat better when he gets home... and being home would result in less depression for him.
He's been reduced, not to just skin and bones, but to this whimpery child who always has to have someone holding him close in his hospital bed... starting to cry everytime the door to his room opens (even if it's just the janitor)... silent... without appetite...
The somewhat good news however is that he seems to be responding to the chemo treatment already... for his oncologist could already detect an improvement in the breath sounds in his right lung.
Truly, there is hope.
Jojo's Dad was released from his confinement last Fri lang. He's now instructed to get regular insulin shots.
I have a niece who was born with a hole in her heart. Her pediatrician detected this abnormality when she was only 3 weeks old. She's a thriving 4-yr old now... one of my flower girls.
However, the left part of her chest cavity swelled (?) or grew higher than her right... so she's scheduled for some tests to check.
Thanks to everyone who left kind words while I was generally away.
|| Thursday, October 20, 2005 ||AND SO IT BEGINS
I'm not sure if their consultation ended around that time, or the good doctor woke up, found I had a question she hasn't answered yet, and replied with nary a thought on what time it was...
But well, because I stayed home sick yesterday and was drugged the whole day (read: asleep the whole day) and because I knew that the conclusive findings were in and the doctors were going to relay all info to my brother (finally!)... I was unfortunately awake at 2 am.
Imagine what one would think when an oncologist tells you that your nephew has to be re-admitted in the hospital that day too, as opposed to just the scheduled parent-doctor dialogue.
And I did the only thing I could do at such an ungodly hour.
Cry because my defenses were down and I was so scared.
I think I just had a pretty good idea how parents feel when the phone rings during the wee hours of the morn... and you know that one of your kids isn't home yet.
Good thing Doc Emer just got home and managed to calm me down with his text messages.
And good thing that Jojo woke up after my 3rd message to talk to me till around 3:30 am.
I've cried myself to sleep many times before...but never over a life.
Usually it was over some stupid love life.
I think I got tired pretty soon though... feeling so bad that it's the last night my siblings will probably sleep well... unsure when Pyro will be back home again...
Pyro woke up early, just past 6:30 AM. He took his meds for primary complex... and generally woke everybody up. So his Dad thought it would be fun for him to make lambing my cousin who was in my room.
I woke up... told him we have to have Pyro re-admitted. I think that was the moment when he really knew that it's really serious.
GERM CELL CARCINOMA located at his mediastinum and grew in his right lung.
Basically, the oncologist said we have two options:
1) Thoracic Cardiovascular Surgery then Chemotherapy, or
2) Chemotherapy then Surgery
The thing is, it's generally better (so the oncologist said) to remove the mass first because it's like killing ten enemies already, and then have the patient undergo chemotherapy.
However, since what Pyro has is so big and its location so critical... even a surgeon of 30 years experience wants them to try to reduce the mass a little because he couldn't guarantee that Py's heart would be able to take it.
Radiation is out of the question. It seems this treatment procedure doesn't work well with this type of cancer.
Py starts chemo tonight. And his survival will depend on so many things...
like the tumor responding to treatment
him not being allergic to chemo
his body not giving in to the disease
his body being able to mend after surgery
the tumor not continuing to grow
and every little thing in his body remaining stable... his white blood cells, his red blood cells, his kidney functions, his liver functions, etc
I always knew about cancer.
I read about it.
I read enough to be scared of it.
Then Chicken Soup for the Soul stories made me aware of how trying it could be, both for the patient and for those who love the patient.
Then I had two colleagues suffer from it. One of them has already died from it. And for some 2 1/2 years, we'd spend lunch times together... us 3, where they exchange stories of chemotherapy sessions in front of me. The other one seems to have fully recovered, albeit not without scars, both physical and emotional.
I have been scared to have a parent suffer from it.
Esply since I had to help watch over an uncle who had colon cancer (which has converted itself into prostate cancer).
I have dwelled on the possibility of me or my spouse suffering from it... as a result of second-hand smoking or pill use or stress or whatever.
But I have never, for the life of me, thought my real suffering from cancer would come in the form of the angel we've fallen in love with last 21 July 2003.
We're looking at 6-10 months of treatments and rehabilitation. And that is if we're lucky.
But we're going to be strong for Py.
|| Monday, October 17, 2005 ||WHEN IT RAINS, IT POURS
We thought the waiting game for the biopsy results from St. Luke's would end today... I was preparing for my world to totally crash or to be given MORE HOPE. But alas, some things are just meant to drive you crazy first before you get a reprieve.
Weirdly enough, we were advised to become out-patients for the meantime and be discharged today. Still awaiting advice from Dr. Gepte (Py'soncologist) but I think it will come through.
Today marks the 2nd week of this terrible ordeal. And I can't help but be glad that Pyro can come home, even for only awhile, thinking it would be less stressful for him at home since it is HOME.
But tell Py that we're going home and he now says "AYOKO".
After all, he's gotten used to riding on wheelchairs and laughing at the monkeys on the murals of PCMC's 2nd floor. He's even taken to reminding people to make him wear a mask whenever he ventures out of his room. He now even plays balloons with doctors and nurses and greets them heartily when they visit.
Of course, that's mainly because he hasn't been strapped to an IV for days now.
But it's really amazing how a child can easily make 'bad things' his friend... and adjust to depressing circumstances.
Py has learned to make the hospital his home.
And having us visiting him everyday helped, am sure.
And am now at a loss on whether this bodes well for him and his fight... will making the enemy (cancer) his friend kill it, or will making it his friend mean he'd embrace the illness and succumb to it?
And if Jojo isn't already very depressed about his godson, Life throws another ball his way and lands his father in the hospital.
Future father-in-law's kidneys are having problems, we think as one of diabetes' complications. His blood sugar and pressure are both still high and he's been confined for 3 days now.
When it rains, it pours.
But I know the same is true for blessings.
I've been dazedly praying ever since this started.
And i've been dazedly in pain.
And I know God will not always transform the pain or make it go away.
But I know pain transforms people.
Look at Py. :)
I just hope i'll be transformed for the better...
|| Friday, October 14, 2005 ||HOW AM I GONNA COPE?
I cannot say there haven't been tears from my end over this. But the fact that my brother and sister both have shed copious amounts of tears already out of anguish, I find that I have also been relatively calmer than one would usually expect.
Especially since am one of the more melodramatic in the world.
Then again, I do become more calm and composed and objective when am most in pain.
Yes, some call it feeling NUMB.
And i've only had a decent sleep after they've confirmed that the tumor is malignant. I guess it helps knowing more about your enemy, because you can now give it a face, a name.
So, I go about my daily tasks, unable really to concentrate on work, and without the energy to tackle wedding preparations. I coordinate people staying with Pyro at the hospital, I monitor the bills, I play "bearer of bad news" for my Mom (who's in the US) and his Mom (who's in Vietnam) and I perform a regular text brigade asking people for prayers.
And last night, hearing phrases like "prognosis is very poor" and "these cases are very rare", all I could do was nod my head.
After all, i've come prepared with literature I got from the internet.
But of course, nothing will ever prepare me for the sight of my siblings sobbing. And I cried with them.
I can't remember a time that we cried like that, all 3 of us. Especially since Jun and I aren't really close. Time stood still and there was only pain.
But there I was, the eldest, holding them both... crying with them in a detached, observing ghost-like way.
I even noticed that one of my sister's hair has fallen on her uniform and brushed that away.
Or that she's quaking with emotion as she kept moving her head from side-to-side, seemingly wanting to negate or deny or erase all the things that the doctor has told us.
I wouldn't be surprised if she flunked her exams. She's been aching to just stay with Pyro since last week.
I even had to follow her to the chapel and cry with her some more.
Because I had to ask her to never cry again in front of Pyro. Doctor's orders.
And when she said she couldn't, I reminded her that she supposedly loves Py very much and will do everything for him.
That included being brave.
And to her question why God would send us a nephew and then threaten to take him away prematurely, I didn't really have an answer.
I just told her we will fight. And there is always hope.
But inside, I think I was already silently letting Py go. A coping mechanism, preparing for the worst.
And I am ashamed to be such a coward, to want to avoid pain so. Because this means am not 100% hopeful for Py.
And i'm sorry.
For I really want Py to live.
But I honestly think i'd rather we lose him soon, than see him completely waste away from this illness. I'd rather let him go than have him hold on because he could feel our need for him to be alive. I'd rather he have some more quality of life than to end his days trapped in the hospital.
And yes, those are fears talking.
But it doesn't mean we won't fight, that we wouldn't exert every effort and spend all our resources to give him a chance.
I just hope God will send us signs if it's already His plan to really claim Py again.
So yes, I'm letting go... and letting God.
Pyro was never a chubby kid. He never seemed to have baby fats. But compared to my other nieces and nephews, we consider him healthy actually because he's only had the usual colds but always remained energetic and noisy.
The worst he's had is a recurring throat infection (mainly due to his infernal habit of sucking stuffed toys, pillows, blankets) and roseola.
Two weeks before my birthday, Pyro fell sick. He had fever for 3 days but his Dad dismissed it as nothing.
A week after, my cousin brought to our attention that Py is drawing his chest when he breathes. Monday last week, she was asked to bring Py to his pedia for a check-up.
The pedia (Dr. Siao-Ty) didn't find anything wrong, even with his breathing. But my cousin refused to leave her clinic so she had Py get his chest x-rayed to pacify my cousin that he doesn't have asthma.
When the pedia saw the x-ray films, she was shocked. She advised us that Py needs to be confined asap. Her first suspicion was pneumonia because Py's right lung was filled with some dense whatever.
Py was confined at the Metropolitan Hospital that same night. He was discharged Wednesday only to be transferred to the Philippine Children's Medical Center because the hospital said they were not equipped to deal with the tumor they found in Py's lung.
A week after Py's confinement at the PCMC, and after a fine needle biopsy was performed on him, all we're sure is that Py's tumor is malignant.
In fairness to PCMC, they have already sent an oncologist to talk to my family and his pulmologist also dropped by yesterday and we were able to talk, and he was able to explain some more what's really wrong.
Basically, what Heart Center (that's where they first brought in the specimen from the biopsy) was only able to determine is that the tumor is indeed malignant. They've just referred the specimen to St. Luke's to determine naman kind of malignancy and what stage so they can tell us talaga if it was a fast growing tumor or not and give them a better idea of treatment options.
Meanwhile, they're examining Py some more and performing more tests, checking if the cancer has metastasized to, or from, somewhere else in his body.
Weirdly enough, the oncologist said that based from experience and literature, few cancers with the lungs and they want to make sure if the lung is where the primary cancer is...
If not, there may be more hope for Py... because he'd likely respond to treatments... and a surgery would be more likely helpful.
But if not, if the cancer is limited to the lungs alone (I was wrong, I asked the size of the tumor, t's not just 3/4 of his right lung, it's his entire right lung and that lung has already collapsed actually because of the tumor)... they say that prognosis is VERY POOR... and they won't even advise surgery anymore...
Both doctors also assured that they are doing everything they can and trying to expedite everything....but such cases require no room for error so they also have to be diligent in their work and consultations... and they ARE AWARE that time is our enemy right now...
They may even have to get some bone marrow sample from Py... which will mean he'd require general anesthesia.
And the waiting game for us isn't over.