Disclaimer: This is no fiction but our own (mine and my husband’s ) real story, written from my point of view. I’m posting it without any intention of harming or maligning anyone mentioned here especially the ones in the medical field. I simply want to tell our story, the things we went through and the ones we are still going through, to remind ourselves that there’s nothing we can’t endure with faith and love.
PROLOGUE
I seriously don’t know where to begin.
Maybe I’ll start with this memory I have of about five months ago. My husband and I were sitting in a hospital outpatient room waiting for his doctor to see him. With us in the room was this family; mom, dad and a teenaged daughter. They didn’t talk much but worry was written on the parents’ face, their fear palpable in their silence. After a while the daughter’s name was called in. The mom went with her but the dad went outside to wait where he was visible through the open door, pacing back and forth in the relentless late July sun. An hour later, Mom and daughter finally emerged out of the doctor’s office. The mom’s tear-streaked face said it all: the doctor told them a bad, very bad news.
I felt a squeeze in my heart and said a little prayer for this family. I know that look. That’s how I looked when my worst nightmare had been confirmed.
CHAPTER ONE: My Worst Nightmare Has A Name
We go back in the afternoon of May 12, 2016. It’s a beautiful spring day but all that beauty is lost on me. Except for my husband Adi and my sister Michelle, no one knows I have been wrapped up in anxiety for almost a month now. I have been oblivious to all things bright and beautiful around me.
I take the bus from school, impatient to get home at the same time dreading to open the apartment door. This morning Adi went to see his doctor. I know the news will either be good or bad and nothing in between.
He meets me at the door. I ask, ” So what did the doctor say?” He replies, ” Let’s sit down first.”
We sit in his study, then he tells me the words that will haunt me for the rest of my life:
Adi: “My doctor said it’s cancer and it’s called Chondrosarcoma. The good news is, this type of cancer has a high prognosis. The bad news is the position and the size of the tumor. It’s in my sinus cavity. It’s already big, sweetie, it’s pushing my brain.”
The moment he says these words my face mirrors that of the girl’s mom’s. No one but the two of us can hear our hearts breaking in a million pieces.
Back when he was healthy. Top: Angkor Wat, Cambodia 2014. Bottom: Siena, Italy 2012.
CHAPTER TWO: When It All Officially Began
If you think this type of cancer would come in a blaze of symptoms, you’re wrong. At least not in Adi’s case. It came slowly, almost stealthily, that when we finally caught on, the tumor had already grown and his sense of smell was almost gone.
His doctors don’t know when it all started. I have a suspicion it all began when he started to snore about two years ago. It wasn’t loud snoring, not the kind that would wake up the dead and slap you quiet if they could, so we just dismissed it as another extra baggage you carry when you’re forty.
Then there was the week-long headache in the early autumn of last year. He went to see his GP, who sent him for an X-ray of his sinuses. The result came back negative (which to this date still baffles me).
Since the summer of last year till his diagnosis this spring, he had a toothache that came and went as it pleased. Same tooth, same level of pain. His dentist drilled and filled but after a month or two it would be painful again. On his last dental visit, my husband was told he had an inflammation in that tooth. His dentist drilled a deeper hole, filled it some more and sent him home with a copy of his dental x-ray. Easy peasy lemon squeezy.
There were still other symptoms that only made sense after April 10th of this year. For us, this is the official date of when it all began. This is when his entire jaw hurt like hell that we finally realized this is not your ordinary toothache.
CHAPTER THREE: A Nosebleed May Not Be Funny After All
April 10, 2016
Adi is back from playing tennis with our friend Karel. It’s lunchtime on a rainy and cold Sunday.
He’s sitting quietly on the couch with a faraway look on his face. I put lunch on the table and ask him what’s wrong. He says it’s his tooth again. He also feels he’s coming down with a cold again. His left nostril is still blocked from the last cold he caught few weeks ago.
We eat in silence, each adrift in our own thoughts. When lunch is over, I start preparing him my concoction against annoying colds; chamomille tea, lemon and honey. He drinks a few sips and right away starts grunting in pain. He covers his jaw with both hands, trying desperately not to scream.
You have to understand that my husband has a huge tolerance for pain and is hardly dramatic about it, unlike me. To see him in this condition makes me grab my phone to call for an ambulance.
Adi: No, don’t call. I’ll take a pill and maybe the pain will go away.
Me: No, this doesn’t look good. We have to go to a hospital.
He takes a pain reliever and paces back and forth, back and forth, until the pain slowly starts to dissipate. He says it’s getting a bit better, that the pain is now concentrated more on the darn tooth again.
Less than an hour later, we head to the nearest hospital in Vinohrady. In no time he is called in. I’m not really worried. There’s no reason to be worried. It’s just a toothache, an inflammed one like his dentist said. It will be okay. He will be okay. He is okay.
After about 20 minutes, he’s out of the doctor’s office. “So, what did the doctor say?,” I ask. He doesn’t answer right away and motions for me to follow him out of the clinic. We’re out in the damp, cold hospital grounds before he tells me what he has been told:
” The doctor said I have something in my nose. She’s not sure what it is, maybe a polyp or something. She took a biopsy. We’ll know the results in ten or so days. She wants me to use a nasal spray meanwhile and to come back on Wednesday for a check up.”
I say ok, you’ll be fine, making a mental note to google what’s a polyp once we get home. Little do I know that Adi at this point already knows he is not fine.
But me, I am oblivious to his inner troubles. Ignorance is indeed bliss because I am just so ignorant about diseases in general. For me, what could go wrong with a toothache or a nostril blockage and whatnot? It’s far from your intestines, as my grandma used to say, so everything should be okay, right?
Turns out I’m dead wrong.
Back when he was healthy. Top to bottom: Cantilan, Philippines 2013 and 10th wedding anniversary in Karlovy Vary, Czech Republic 2014.
The reality that Adi may be seriously sick only starts kicking me in the gut when five days later he tells me he had a terrible nightmare the night before. I ask him what was it about. I can sense that he’s hesitating to tell me, carefully weighing the words he’s going to say.
He says he’s worried something is really wrong with him. More than that, he’s worried about me, what will happen to me if something will happen to him. Who will take care of me, who will help me navigate through all the Czech systems especially now that we just bought another apartment. How will I cope with everything on my own? His barrage of worries continues on. I frame his face with my hands, his image is blurred with my flowing tears.
Me: “Don’t worry, Adi, you’ll be fine. Even if you’re really sick, which I think you’re not, we’ll fight together. I think you’re just stressed with everything, with the buying of the apartment and this. You should see your friend Lukáš today. Maybe you need a breather. Don’t worry about anything. Don’t worry about me. I’m fine. I’ll be fine. Let’s wait for the biopsy results, also for the CT scan result which they told you on Wednesday to do in a few weeks. Then we’ll go from there, ok?”
He nods, a tiny bit appeased with my monologue. In the evening I’m able to convince him to go for a drink with his friend. When he leaves, I immediately start googling for polyp symptoms, nasal problems, perennial toothaches, etc. I type his symptoms and nasal polyp pops up. This is good, I tell myself. A small surgery can remove it. The only thing is that alongside nasal polyps, paranasal sinus cancer also keeps popping up. These two diseases almost have the same symptoms except two: night sweats and nosebleeds. Adi had about three nosebleeds the past few months.
His symptoms, scattered in the course of about nine months, are:
- headache
- toothache
- clogged left nostril
- cold that lasted over two weeks
- decreased sense of smell
- mild to moderate night sweats
- nosebleed in the left nostril
- snoring
I start shaking as fear takes over me. This is bad. I dismissed the night sweats as a bad company tagging along with his bad cold and we thought the nosebleeds were just because the air was dry in the old apartment. Teachers and kids at school often have them especially in winter so no big deal.
Back home in the Philippines we make fun of nosebleed as a figurative way of saying things are too much for you to take in or to understand. Then we laugh at the joke. Except that I’m not laughing now. I’m scared.
—- to be continued —-
Marielle Does 