Month: December 2013

What Christmas Means To A Girl Who Almost Lost Her Life

…. And what it should mean to you too.

I am a Christmas miracle.

During my surgery, the doctor called my parents and said, “If this is cancerous, I’ll have to close her up and send her home.” With a tumor the size of a cantaloupe, there would have been no hope for me – even with chemotherapy.

After being discharged from the hospital and driving back to Florida, I made the decision to stay put. I wasn’t mentally or physically able to fly back to Trinidad just yet.

We were lucky enough to find flights for the rest of my siblings to meet us three days before Christmas. And that is what counts the most.

It’s extremely different. It doesn’t feel like Christmas at all – or at least that’s what I thought.

I planned to build snowmen, put up a tree in my apartment and sing carols all November long to prepare myself for a great Christmas. We all know those plans went down very quickly. And my spirit had been shot after spending so much time in a hospital that only had one wreath hanging.

Usually, at home, I celebrate Christmas with all 100 family members on both sides of the family. There are red decorations, red food, and red everything in every corner.

BUT there’s a hustle and a bustle that I did not miss. Where and when did we lose the meaning of Christmas?

We’re always running around, starting mid-November, looking for gifts for this person and that person. We’re always lying on the floor, looking under the tree, and counting how many gifts have our names on it. Who cares?

That’s not what Christmas is about. Christmas is about being with your family, and most importantly being able to celebrate having your family with you. I’m so blessed to even see another Christmas.

Christmas is also about giving. Sure, we should give to those that we love, but what about the less fortunate? There are so many children that Santa never gets to. There are so many people that don’t even have bread on their tables while we make and eat unnecessary amounts of food.

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I kept crying about not being able to go home. I felt guilty and I wanted to be with my grandparents, aunts, uncles, and cousins more than anything else in the world. They’re my rock. But, there is good in just having my intermediate family here in Florida. We can really understand why Christmas is so important. What happened over the last few weeks should make our love for each other grow so much more and we can really learn to be grateful for having each other. This gives us time to reflect and build upon our experiences.

I am so happy to spend yet another Christmas with the most amazing people I could have ever asked God for.

Also, I finally got the experience of having a real Christmas tree. YAY!

Open Arms and An Open Heart

Bad days tear me down. Maybe I should say moments instead.

My emotions are all over the place. One second, I’m smiling; the second after, I’m crying,

My hormones are also going crazy. I’m just bitching all the time. Maybe it’s because the nurses are weaving me off the heavy drugs, or maybe I’m just sick of the tubes that have been sticking out of my body for the past 12 days.

It’s no fun for anyone – mom and dad are probably so sick of me.

Get me this…
Grab that for me…
Take me here…
Do this… Do that…

Demands are flying left, right and center. It doesn’t stop.

The worst part of it all is having someone take me to the bathroom. I have the weakest bladder ever so I pee very often – this obviously doesn’t work in my favor when I have so many cords attached to me.

I also feel like a woman in menopause when I get hot flashes. I go to bed freezing cold, and I wake up drenched in my own sweat. It really is an issue.

But how dare I complain?! The woman in the room right next to me has been on oxygen for a month. Her cough radiates and echoes in my room. It sounds like a wet dog cough. The nurses say that she may not even make it.

For those who don’t know, this is Pennsatucky.

There’s also another woman on the cardiovascular side of the hospital floor. She has no family with her. Her husband and her mother apparently don’t care. You can tell that this woman has a few loose screws but no one deserves to be unloved. I swear she looks exactly like Pennsatucky from Orange is the New Black, which is appropriate because we are in prison.

She wonders the halls at all hours looking for someone to talk to. She’s lonely.

She passes time by coloring children’s drawings. Her “art” hangs everywhere in the hospital. She gives them to them to the nurses, other patients, and even the cleaning women. She’s the Frida Khalo of UAB.

Her doctors don’t know what they’re going to do with her as yet. She may have open heart surgery, a heart transplant or some other crazy extreme. Her life hangs on uncertainty.

Again, how dare I complain?

Having such a major surgery and having no support is traumatizing. I cannot even imagine how she feels.

I make dad buy her flowers in the gift shop. I take them to her room, and she drowns in her own tears. I give her a tight squeeze and I leave her room sniffling. We shared a special moment.

There are three things this experience taught me:

  1. Don’t judge a book by it’s cover. Everyone goes through life experiences that shapes them to be who they are today. You don’t know what people have been through, so just keep an open heart and wide arms.
  2. I am so lucky to have the support I have. Even though mom, dad, and aunty Christine are the only three people with me, I have an army backing me up at both homes: Syracuse and Trinidad. It’s really important to connect to people who are going through a similar situation to you.
  3. If you can lend a shoulder to lean on, a smile to spread or a listening ear, it can make a huge difference in someone’s life.

The Aftermath

Where do I even begin?

Last Friday, exactly a week ago, I had two thirds of my left lung removed. The surgeon said it was the size of a cantaloupe. That’s really very scary.

I originally thought they would have had to remove my ribs, so as soon as I woke up, my first question was what did you do?

I vaguely remember speaking to my surgeon and seeing his shadow. I just nodded and smiled the entire time.

My strength actually fascinates me. My father took a video of me crying. I didn’t cry for myself. There was no self-pity. I cried for those around me. I cried for my aunt. I cried for my surgeon. I cried for the people I love.

                                        

Most of my time in the hospital has been a blur – most of it spent on narcotics that send me to cloud 9, which I really don’t mind.

As soon as I open my eyes, they shut, once again allowing me to fall into a deep sleep.

It seems like a different world. My daily activities consist of eating, taking drugs, sleeping, and doing that all over again. I have no worries and I have no interest in doing anything besides laying in bed and playing Candy Crush. I cast aside any other activity that stimulates my mind because my attention span is all of zero. Anytime I try to type a text, I fall asleep after the first sentence (which usually looks like: inifnirgjifjriw hugatrqftv wfrn).

photo 2 (1)I hardly ever sleep. Every hour on the hour either a nurse, a respiratory specialist or a patient care technician comes in the room to do something with me. The hospital has no clock. They give me injections, and take blood and X-rays whenever they feel like it.

I am Bane.

I am Bane.

I love my respiratory specialists. They nebulize me and then they pass a percussor along my back for 20 minutes. It’s heaven.

I’ve taken so many medications. For a person who never even used to take Tylenol, I’m poppin’ pills like it’s my profession.

                                        

Having been contained in one room for such a long time would give any normal human being cabin fever, but I don’t mind it too much. It’s different. The nurses have become close friends of mine and the only other social interactions I can say I’ve had is smiling at other sick patients as we both make laps around the floor’s hallways. But we’re all here trying to fight for the same thing: life.

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My first steps.

I walk to pass time and to straighten my back a little – after all, I sit in the hospital bed 98 percent of the day. When I get up and go, I go. There’s nothing else to do and walking makes me feel better so I make 3 to 4 laps each time I walk, which takes an hour to 45 minutes. Mind you, I walk so damn slow and I get winded very easily. For a person who ran 3 miles everyday and swears by CrossFit, it’s really depressing to see my body so weary and run down.

I’m the most fashionable walking patient there is. I have my Prada, Gucci and Tory Burch clutches at all times. I wish this was true – a girl can pretend, right? The bags are two chest leak boxes, and the other holds my heart rate monitor.

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I had two air leaks. So, the doctors had two chest tubes connected to the lung through the left side of my torso. Fortunately, the first was removed after 3 days but I still have one in that just won’t heal properly. I won’t be released from the hospital until then. It can heal in two days or it can take 2 more weeks. Who knows what’s gonna happen.

There are no more flights to Trinidad. Obviously this saddens me in so many ways. Christmas is my favorite time of the year and I haven’t even had time to enjoy it or introduce it in any way. I would have been in Syracuse this week finishing my finals, building a snowman and finally decorating my very first real Christmas tree. But, I guess not.

Things don’t always work out the way you want them too, and I get that. I just hope everything works out. I don’t want anything else but to start the new year in good health with the rest of my family.

                                        

Day 1 was like starting life from scratch. I had to learn how to walk and function again. It was very difficult. I was given a few breathing exercises to do every single hour I’m awake to re-expand the lung.

Over the past few days, I’ve seen remarkable progress. Every single day, I’m able to do something new, whether it be something as little as putting on my own socks or sleeping on my side. My scar is almost fully healed and it just adds character (not that I need anymore).

                                        

What I’m thankful for:

  1. Mom, dad and Aunty Christine. I don’t know what I would have done without each of them.
  2. Having a hospital that has room service. Time to feast!
  3. Amazing nurses. Southern hospitality is a real thing, people.

The Calm Before the Storm

Dec. 6, 2013.

10:45 p.m.

Earlier today, I had an appointment to do my fifth and last (I hope) CT scan. This was the first I have ever done with an IV contrast… Things got hot. Let’s just leave it at that. For a quick second I thought I was going to faint – thankfully, I didn’t.

When that was over, I went to another part of the hospital building to pre-register for my operation. They took 7 valves of blood. Right now, my arms are black and blue. All over. I’ve been injected so many times this week, I can’t even count it with my fingers.

Thankfully after that, I got to enjoy the rest of my day.

I figured going to see a movie would be relaxing because there’s literally nothing else to do in Birmingham. So, we saw Best Man Holiday.

GREAT movie to see the day before my surgery. It was basically a story about a woman who died of cancer… Not okay.

Dad steupsed and left the theatre, while Aunty Chris and mom cried the whole way through. I, on the other hand, laughed. I don’t know why. Maybe it was to protect myself so I didn’t look weak. Whatever, moral of the story: It was the last movie I should have watched today.

Ever since, we’ve been at the hotel taking it easy. I read through the packets that the nurses gave me and the surgery sounds horrible. I’m petrified but I’m trying my hardest to fake being happy not only for my parents, but mostly for me. I find it easier when I trick myself into thinking that nothing is actually happening.

It scares me that I won’t have an appetite – I love eating. I’m frightened of having too many tubes in my body – between a chest tube, an arm and neck IV, a drain, and a urinary catheter, I don’t know which one freaks me out more.

I am also a person who loves control and independence. Not being able to control when I’m awake freaks me out. I’m uncomfortable with having people do any and everything for me. I like to do it myself. If the doctor takes out ribs, I won’t be able to do anything for a month. That’s a long time and I’m going to go crazy.

I don’t know if to be excited or scared. After all, this is going to be the first surgery I’ve ever done so I’m frightened, but I’m so happy to finally get this huge bitch out of my chest so I can breathe properly again.

Whatever, I’m over it.

This has gone on far too long and I just want to get rid of Hefty Helga. She needs to go.

I trust my surgeon and I know that the beautiful Alabamian nurses will take good care of me.

God has a plan. He always does. He would never put me in a situation that I cannot handle on my own. He always picks on the strongest people – I’m a trooper.

If I scar, then I’d just look 10 times more beautiful than any other woman on a beach. And I’m going to rock that scar like no one’s business.

Wish me luck.

I know my Grandma Teresa and Uncle Paul are watching over me. God is with me too. God is good and I’ll be in good hands.

Sweet Home Alabama

Dec. 2, 2013.

My lungs feel pea-sized. I can’t breathe. I’m short of breath, and I’m hyperventilating.

Anytime I breathe too much air, shocking pains run through the upper left area of my back.

The altitude from the flight clearly didn’t work well with my left lung.
Helga, stop squishing it and let me breathe.

I’m so close to begging mom and dad to admit me to the hospital early, but I don’t want to freak them out.

I just take slow and steady breaths.

                                        

Dec. 3, 2013.

“I have 99 problems and a tumor is one…”

I’m making up my own lyrics that describe my story, and I am cracking myself up. I’m so excited to finally meet Dr. Cerfolio, the man who will save my life, that I begin having my own party in the patient room.

He walks in and hugs me before doing anything else. Man, I love him already.

He pulls out a chart of the lung, starts circling things, writes what he thinks I may be diagnosed with and I stop listening. Not because it’s too much to handle, but because he knows his shit.

This man exudes confidence that I haven’t seen from any doctor I’ve visited so far.

I trust him already. He needs to take ribs out, I’ll gladly turn over and let him do what he needs to do. He’s the man. 

Also, if models take their ribs out just to look skinnier, then who the hell am I?! Pshhh, I can do this!

                                        

Dec. 4, 2013.

Biopsy numero dos.

This time it’s different. They’re doing an EBUS, which is basically a bronchal scope. They go into the major bronchal airways with an ultrasound device and take lymph nodes out to get more samples of Helga, my tumor.

I lay in another hospital bed. This time I’m in a huge room with 7 medical nurses. Multiple screens surround my bed and I freak out a little.

“You have a rare case, huh?”

The pulmonologist walks into the room and says, “Why are you here? These tumors only exist in old, dying people.” Well, that could be taken as a good or a bad thing.

The nurses around me ask more questions and they’re all frowning. It certainly doesn’t make me feel any better. I sulk a bit and feel a little sorry for myself.

That quickly fades as I hear laughter behind me. The pulmonologist reads Dr. Cerfolio’s email out

loud. “There’s a beautiful 20-year-old girl who’s coming to you today. She’s very personable and ta

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lks a lot. She’s precious.”

I smile knowing that I can make other people smile – even in such horrible situations.

I’m ready to rock and roll. I’m nervous, but ready.

Another IV? Another dose of the Twilight drug? I mean, I’m doing this like it’s my second job. I’m not saying that I particularly like it, I’m just getting more used to it.

Let’s do this.

Sitting, Waiting, Wishing

Nov. 29, 2013

11:30 a.m.

We have no idea what the future holds.

I have no surgeon, and I still don’t know what the hell Helga is.

My doctors help me look for a thoracic surgeon in a tertiary center who will be able to nail my case on the head.

We look at Emory, John Hopkins, Yale, Sloan Kettering, M.D. Anderson and every other hospital under the sun.

                                        

5:00 p.m.

After hours and hours of searching, one man stands out like a swore thumb. His name is Dr. Cerfolio and he’s just the man I need.

We email him, explaining every single detail of my case.

We leave the doctor with hopes that Cerfolio will reply, but we really don’t expect anything much because it’s the day after Thanksgiving – everyone’s at home with their families.

                                        

10:00 p.m.

“THANK YOU, JESUS.”

Mom runs into the kitchen crying. Some time soon, I expect her to kneel on the floor, look up at the sky, and shout crazy things. Haha, I’m kidding. She was just extremely happy and I understand why.

Dr. Cerfolio replied to our email asking for my documents and scans.

We’re in, baby.

I close my eyes and I thank God because he has a plan. He always does. Now, I’ll be in better care.

…To Alabama we go.

A Very Pink Thanksgiving

Nov. 28, 2013.

6 a.m.

I rush out of bed.

I run to the bathroom.

I’m cold sweating.

The room starts spinning.

Here it comes…

The toilet is filled with a pink liquid. No chunks. Just pure, pink fluid.

What did I… Ohhh.
I ate a whole carton of strawberries last night. I’m guessing they didn’t settle very well, but that was honestly the yummiest vomit I’ve ever had. I kinda licked my lips after. HAHA

I don’t know what screwed with my stomach more, the nerves of not having a doctor or the built-up gas from not eating at all some days to do different tests.

Ugh. Seriously?!  It’s Thanksgiving – the ONLY time mom ever makes her sweet potato pie that is to DIE for. If there was one person who had to get sick on Thanksgiving day, it would be me.

I shower and drag myself back to bed.

                                        

5 p.m.

Time flies when you’re sleeping.
I went to bed when the sun rose and now, I’m waking up as the sun sets.

The living room/kitchen area smells delicious.
There are three platters on the table: Sichuan rack of lamb, corn pie and sweet potato pie with perfect roasted marshmallows.

My mouth waters and yet, at the same time, my stomach turns.

                                        

6:00 p.m.

I love being in Florida because even though it’s miles away from Trinidad, there is still a comforting sense of home in the sunny state.

My mom’s brother and his family lives there and we hardly get to see them, so spending Thanksgiving with them was truly something special.

I thank God everyday for my family.

There’s nothing like them.

When I proudly say that I speak to my parents every single day, my American friends laugh at me. It aggravates me that many young people don’t appreciate their parents.

If it weren’t for my mom and dad, I don’t know where or who I’d be. I’m grateful for everything they’ve done for me. Especially for past two weeks and standing by my side no matter what.

There’s so much to be thankful for.

Believe it or not, I’m thankful for my tumor. It helped me mend my faith and my relationship to God is better than it has ever been. It also taught me to be thankful for every single morning I open my eyes. Every day is a blessing and that’s something we seem to brush past us.

I also may not have a surgeon or a set surgery date right now, but I’m thankful for everything each doctor has done to help me. I know that God works on his own time and in his own funny ways. I trust him.

I may have been puking my guts out earlier, but delicious food sits right under my nose and I can’t fight the temptation. I stuff my face, I laugh and I smile with the people that I love the most – and I never got sick again. That’s definitely something to be thankful for.

Relying on Uncertainty

Nov. 27, 2013

It’s been 2 weeks since I first found out I have tumor growing in my lung.

It’s almost the size of a baseball.

I call her Hefty Helga. 

Today, I have an appointment with my surgeon to discuss what we’re doing on Friday morning, the day I’m scheduled to take Helga out and get rid of her for good.

                                        

4:30 p.m.

We’re an hour early.

This means more waiting time.

This also means more nerves.

                                        

6:00 p.m.

I’m guessing the doctor had a really long day. Maybe some delays?

We’ve been here for 2 hours and 30 minutes.

No one is left in the waiting room. It’s just mom, dad and I.

I feel sick. I want to puke. I’m cold sweating.
Most of all, I’m impatient.

5 minutes later…

“Ms. Sabga.”

Oh, thats me. 

                                        

Doc is on the phone, pacing the hallway.
We can only hear his heavy footsteps and some casual murmurs.
Something’s wrong. I feel it.

He enters the room, rubs his mustache and sighs.

” I can do this but…”

Well, the ship sunk. 

“We’re sure it’s in your chest wall and depending on whether it’s malignant or locally malignant, I’d need to remove two to three ribs.”

Excuse me. WHAT!?
For the past two weeks, as far as I knew, I just had to remove the left lower lobe of my lung.

And I accepted that. But this… 

This is news.

Mom’s in the corner crying and a ball forms in my throat. I’m choking it back and fighting with myself.

I will not cry. I’m gonna take this like a man.

“I can remove your mass for you, but there is a risk of misread pathology and me taking out ribs for no reason. Maybe going to a tertiary hospital would be better for your rare situation.”

I want it out now. 

“I am more than capable of doing it but if you’re not comfortable with that, I would highly advise going somewhere that sees cases like yours very often.”

Why. Why. WHY.

It’s the day before Thanksgiving and no surgeon will be available.

Dammit. I’m more confused than ever.

                                        

As we walk towards the car dad looks at me. Worry fills his face, and he shakes his head.

“We’re right back where we started two weeks ago, huh?”

The Biopsy Knows No Truth.

Nov. 18, 2013.

12:30 p.m.

The phone rings.

It’s the pathologists.

“It’s benign.”

Mom starts crying hysterically.
Dad starts throwing fists in the air.
… I just close my eyes and thank God.

This is certainly the best news – and the only good news – we’ve heard all week.

                                        

3 p.m.

We begin popping champagne and celebrating until another phone call changes the day’s events.

It’s my hematologist.

“We don’t trust biopsies. It’s hard to rely on one pathology reading, so we’re sending it to another health center for more results.”

… Way to burst everyone’s bubbles.

I guess it’s okay though. At least we have one bit of hope to hang onto.

                                        

Nov. 26, 2013

The second pathology reading was sent to a large, university hospital where many pathologists examined my tumor’s extracts.

The report does not label the tumor. It can be benign, and it can be malignant.

Honestly, what does that even mean?!

                                        

The doctors are confused.

It’s size too large to be benign and the PET scan shows high levels of activity leading the doctors to think that the tumor maybe be malignant.
On the other hand, they believe it may be benign because it hasn’t spread (yet, thank god) and the center of the mass is loaded with calcium which is not found in malignant tumors (the only malignant tumors with calcium are found in the brain).

No one knows what to call my tumor.
No one knows how to label it.
WHAT ARE YOU, HELGA?!

I’m so sick of this emotional roller coaster.

                                        

But on the brighter side of things…

The doctors believe the tumor may be my twin.
You heard me… my twin. It could come out with teeth, hair, or feet.

My life is like Aunty Voula’s.