What Eddie Taught Me

Hello. I am Anna, Eddie’s Anna. 

This has been a hard week for everyone here today, I know. For Eddie’s family and I, this has been the hardest week imaginable. While the pain of this week has been nearly crippling, nothing compares to the pain that Eddie has had to endure over the past six months.

Always wanting to show his friends and family a happy and strong face, Eddie probably would not appreciate me telling you about how hard it has been. Over the course of his battle with Aplastic Anemia, after being thrown hurdle after hurdle, there were several times where Eddie was on the brink of giving up, but each time, he mustered up the strength to keep fighting. 

Before Eddie, I used to think that strength starts with one’s mind. You can do anything that you put your mind to.

Eddie, however, taught me that strength stems from love. 

I had always known Eddie to be a man of great strength, but I don’t think I ever fully thought about where his strength came from. It was not until a few days ago, when I started reading Eddie’s old letters to his parents, written during his Marine Boot Camp training at Camp Pendleton, that I realized how Eddie had always found the strength to keep fighting. 

I would like to share with you a part of his letter, dated September 14th, just a few days after the attacks on September 11th. Eddie was 18 years old at the time. 

He wrote:

Tuesday, bad things happened right? I hope war does not happen, but if it does, I am prepared to give my life to defend my country. You asked how is 훈련 (training)? It’s very hard, but almost over. Only one more physically challenging thing left. The Crucible. I heard it’s easy and I heard it was hard… I don’t know what to believe. I assume it will be hard, but you find something special to keep you going. My “special” power from inside is the love of my friends and family. Oh yeah. Don’t get scared when I tell you this but I thought I was almost going to die on Wed. We did the Gas Chamber. It was one of the scariest moments in my life. Did 아빠 do it to in Korean Army? I’m not sure. It hurt a lot. Eyes, skin, throat, lungs…. all burned like fire. My body shook because the pain was so much. The whole time I only thought about my family and friends and how much I love them. I did this while other people were screaming and having panic attacks. Yeah, it was really bad, but I’m still here now. Safe, so don’t worry. 

Eddie helped me realize that love is the light that gets you through the darkness. Though our time together was cut short, Eddie gifted me with a lifetime’s worth of love. I am filled with so much light that I am not afraid of the darkness. His love, along with that of my family and friends, will help me get through the pain of losing Eddie. 

If you loved Eddie, it’s inevitable that tough times are ahead. In those moments of darkness, I ask you to do just as Eddie would do, and pull from the “special power from inside”, the love of your friends and family and find the strength to keep fighting.

Hwaiting! 

Memory 5.3.16

Semper Fi

Hello everyone. My name is Gene, and Eddie was my good friend.

I first talked to Eddie almost exactly 5 years ago to this day. It was several months before we all started business school at University of Washington. There was a class Facebook page that was created to allow everyone who had been enrolled into the program to meet each other. I was looking through posts and profiles, and one particular picture stood out. It was of a Marine standing in the desert night in full kit. A young man dressed in full combat utilities, flak jacket, night vision, and armed with an M16 and a bayonet strapped to his side.

For those who may not know, one of Eddie’s numerous life’s accomplishments was service to his country as a United States Marine. He served overseas in Al Anbar Province in 2005 during the height of the Iraq War as a heavy equipment operator and turret gunner in a combat logistics battalion.

Becoming a Marine and serving one’s country during a time of war is a transformative and life-altering experience. Most recruits who go through Marine Corps bootcamp are merely teenagers; just like Eddie was when he went through recruit training. But the Corps’ historic legacy of shared hardship and experiences is the bedrock of its brotherhood, which spans past, present, and future. There was a well-known scene in the movie Full Metal Jacket when the characters graduate bootcamp. On graduation day, the drill instructor has his platoon in formation and announces to them:

Today, you people are no longer maggots. Today, you are Marines. You’re part of a brotherhood. From now on until the day you die, wherever you are, every Marine is your brother.

Before business school, I had recently left the Marine Corps. So, I was very thankful there was another Marine veteran in the class. Like so many others, I had found brother in Eddie.  When I first met Eddie, he was already several years removed from service and already had foundations of a successful career in consulting. Naturally, I looked to Eddie to help navigate the system, and in the early days of business school, Eddie was not only a friend, but also a life-coach.

During B-school orientation when the class first met, several of us went out to grab a few drinks. We actually ended up having a lot of drinks. When the night was over, we were all walking back to Mike Lin’s apartment. As we were walking back, Eddie wanted to Fireman’s carry everyone. For those of you who don’t know, Fireman’s carry is a technique, widely employed in combat and training, to carry a wounded comrade on one’s shoulders. Eddie, who was pretty trashed at the time, carried several of us down multiple blocks on his shoulders while screaming SEMPER FI at the top of his lungs. Semper Fi is short for Semper Fidelis, which is the motto of the Marine Corps and is Latin for Always Faithful.

At the time, one might dismiss this behavior as just some alcohol-induced silliness. But this was analogous to who Eddie was as a person. During his service, Eddie had Semper Fi tattooed on his arm, and they were words that he lived by... not just in a military context, but it was applied to everything he did. Eddie had a HUGE heart, and he is one of the most loyal, generous, and selfless people that I’ve ever met. He would always answer the call and would carry his friends, family, loved ones, and even strangers on his shoulders regardless of whether he’d tire as a result. Eddie helped immensely with my transition into the civilian workforce. Looking back at old messages, he was always so organized and laser focused on achieving his goals and helping others achieve theirs. Before our first year of school had even started, and before he even met anyone, he was already reaching out to veterans in our class and coordinating our trip to the annual MBA Veterans conference in Chicago.

Thanks to Eddie, most of the vets in our class attended this conference, and thanks again to Eddie, most were able to leverage it to secure their summer internships. While we were there, the conference featured a keynote speaker: a veteran who is now an executive at a Bay Area tech company. His primary message was that as veterans in the civilian workforce, it was our duty to answer the call from our brothers and sisters in arms who are transitioning out of the military and assist them in their search for employment with both empathy and enthusiasm. He was basically saying that we must look after our own. After the conference, a few of us wrote to this man with hopes of receiving some mentorship or guidance, but he didn’t respond to any of us. Eddie was pretty disappointed, but it didn’t stop there.

Eddie knew that loyalty, commitment, and service weren’t just things that you talk about from a podium when you become rich and successful. He knew that it was the actions and the relationships that we honored that truly mattered. So, he decided to establish an official organization at our school to advocate for military veterans and help guide the transitioning veterans into the workforce. His words are written in the organization’s mission statement: “to enhance camaraderie and esprit de corps through service to eachother, the School, and the community in which we study and live.” It was a mission of service and loyalty. During business school, Eddie also worked as a peer mentor and he would go great lengths to help his classmates write resumes and cover letters so that they can achieve their goals. He even volunteered as an instructor for the Junior Achievement organization where he would teach financial literacy to kids.

Eddie lived his life with such vigor and enthusiasm. There is a quote from the classic children’s book, The Little Prince, which says the following:

All grown-ups were once children… but only few of them remember it.

However, this didn’t really apply to Eddie. The way that he approached his ambitions, his passions, his love, his friends, and his life were with a childlike energy, enthusiasm, and determination. Hobbies that he would engage in ranged from trying to drift his white Honda accord, riding motorcycles, cliff diving in foreign countries, playing slightly immature practical jokes on his friends, competitive power lifting, Brazilian jiu jitsu. Even as a 30+ year old man who got a job as a commercial banker, he had bought a skateboard and would go to the local skate parks and ride around with 12 year old kids.

He was never one to be discouraged by “grownup” warnings given by naysayers like, “I dunno… that business idea sounds pretty risky/stupid.” Others may say, “are you sure you’re not jumping into this relationship too quickly.” Eddie didn’t give a crap about any of it. Regardless of what others said, he often did things his way and he did it with conviction. He knew that life was about taking chances and relishing in the moment. He was a go-hard who invested 100% into everything he set his mind to.

When Eddie was in B-school, he and a few other classmates came up with a business plan for a class project around this online professional networking platform (think Linkedin + Tinder + Maps). The idea was to allow professionals to meet and network while if they were new to an area (for example, if one was visiting a tradeshow or conference they can set up dinner/drinks afterwards to connect). After the class and the project were over, Eddie was still invested in this idea. He called up his best friend/software engineer Peter Oh to convince him that this was a great idea and that they should bootstrap a startup company. It was called “Table for Fun,” and they worked on this idea for several weeks outside of class and work. He was making logos, pitch decks, financial models, and thinking about what furniture to buy for their start up office. Unfortunately, the idea didn’t take off as Eddie had predicted.

But there was another instance that things did work out for Eddie. When he first met Anna, he told his friends, “Guys… I started dating this girl and I think I won the lottery.” He said, “She’s the cutest, smartest, and funniest girl.” He pretty much fell in love with her the first day they met. Given Eddie’s penchant for going hard and diving head first into things, a lot of his friends were all like, “okay whatever… sure Eddie.” But, he was right. He had met his soul mate in Anna who was Eddie’s true love: a light to Eddie through all of his days.

Eddie was a perpetual optimist. When reflecting on Eddie’s life, several friends noted that this man was never defeated. Regardless of obstacle or hardship, Eddie was never dejected, never conquered. At times, he would get frustrated. But rather than giving up, as many people would, he’d always be thinking of he could do to right the situation. To him, everything was a challenge that could be solved if he just worked hard enough. He had an undying belief that there was something greater in store and that things will only get better (like the Alicia Keys song). After Eddie was diagnosed with Aplastic Anemia, I visited him in the hospital for the first time. He was with Anna and his parents, and everyone looked concerned. Eddie was looking gaunt and tired, dressed in a hospital gown, and was hooked up to all sorts of tubing and bags of fluids. Seeing one of my best friend in such a state was heartbreaking. I didn’t really know what to say. But then, Eddie said, “Hey man, you hungry? I got some Taco Supremes if you want one.”

This was classic Eddie. I was thinking, “wow… seriously?” Even when faced with his own mortality and struggling through an infinitely perilous journey, he would asked his friend whether he wants a Taco and offers him a beverage. Eddie was one of the bravest, toughest, and most resilient people I had ever met. Even more so, when I see the kind of friend he was, the husband he was, the son he was, it was this responsibility and devotion to others that were hallmarks of his great character.

Victor Frankl, who was a survivor of the Nazi deathcamps and renowned psychologist once said:

Ultimately, man should not ask what the meaning of his life is, but rather must recognize that it is he who is asked. In a word, each man is questioned by life; and he can only respond by being responsible.

I believe this was the legacy of our friend Eddie. He was a man who not only felt, but also cherished his responsibility towards others. He had a desire to carry others on his shoulders and help bear the load of friendship. It was the mark of a true leader who inspired and brought out the best in those around him. A loving son and husband, a devoted friend, an international gentleman, and an eternal brother.

Exactly one week before his passing, Eddie texted me something that I’ll remember forever. He simply said, “We’ll hang out again. And that’ll be a good day.”

Eddie, I know we’ll meet again someday, and we’ll have many things to catch up on. Your life and legacy has touched us all, and you will live on within each of us. Until we meet again, we will all carry your torch and live by your example. We will do our best to live with great responsibility, loyalty, and utmost enthusiasm for life. My friend, your duty is done… Semper Fidelis.


Eulogy 5.3.16



 

4.29.16

Dear Eddie, My Soulmate, 

I love you so much. More than I know how to express in words. 

Knowing that I’ll no longer be able to see you and hold your hand every day is really hard to accept. My heart feels like it’s being torn into a million pieces. Life is going to be so hard without you by my side.   

But, I need you to know that I will be ok. 

I know I will be ok because you have given me a lifetime’s worth of happiness and love. I have so much in reserve that no matter how angry or sad I may feel, I know that love conquers all. This is what you taught me. 

I know I will be ok because I know you will always protect me. With you forever in my heart and my mind, I know that I will find the strength to get through whatever life throws at me.   

I know I will be ok, because you have connected me to a world of amazing people, Ummah, Appah, your aunts and cousins, and your friends. They each hold a piece of you that can never be taken away. I know that when I miss you so much that life starts to feel unbearable, I can ask them to share their piece with me and I will find the strength to go on.   

Remember how I told you that I will love anyone who helped make you the man that you are? I promise to stay true to this. Know that everyone will be ok. Your parents. Your family. Your friends. Whenever they miss you so much that life starts to feel unbearable, I will be there for them, sharing my piece of you.  I promise. 

I know that your dream is to give me the best life. You have already given me that. Because of you, I have the best life, and because of you, I will settle for nothing less. You are the greatest man I know. I am grateful everyday that we found each other.   

You have been through so much. So, so much. You deserve now to be filled with nothing but peace and love. If you could do one last thing for me, I ask that you embrace this peace and love. 

You’ll always know where to find me, because you are in my heart and I am in yours. This, I think, is what it means to be soul mates. 

Hwaiting, Eddie. 

I love you, Eddie. I love you so, so much. 

Forever and Always, Your Soulmate,

 Anna

Eddie, I love you.

Dear Eddie,
I know that you are sleeping right now and that you probably won’t be able to read this letter for awhile, but I just wanted to say that I love you. I love you so much. More than I thought I could ever love someone. 

 
I’m not sure how much you’ll remember. Six days ago you were transferred to the ICU on account of acute shortness of breath. You were breathing about 40 breaths per minute. Too many breaths for any person to keep up. 

 
After consulting with the ICU doctor, we all agreed for you to be intubated and put on a ventilator to help you breathe. You’re still on that ventilator as I write this.  Truth be told, it’s been scary to see you hooked up to the machine. 

 
The Universe seems to be throwing us lots of hurdles as of late. More than one would deem reasonable. Makes a person wonder why the Universe would be so cruel. But, I haven’t given up on the Universe. 

 
It took me so long to find you, to find someone who understands me; to find someone who cherishes me as as much as you do; to find someone who I could love with all my heart. The Universe can’t let me down. 


I love you, Eddie. 


행복하자 

아프지 말고 

행복하자 

아프지 말고 

사랑해 


All my love, 

 Anna

Eddie vs the G@#$%& Pneumonia

Eddie’s status: The lung situation is still no bueno. 

  • Pneumonia doesn’t seem to be improving, possibly it’s gotten worse 
  • Pleural effusion remains
  • There’s now an air bubble in his lung to contend with 
  • Eddie is currently undergoing daily granulocyte transfusions to help fight the fungal infection 


I drafted a lengthy update over the weekend, but lost it when the tumblr editor crashed. I took that as a sign that I should just cut to the chase.

The short story is that based on his last CT chest scans, Eddie’s fungal pneumonia does not seem to be getting any better. 

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According to the doctors, the pneumonia in his right lung has gotten more dense. Also, shortly after the thoracentesis, a procedure in which they drained the pleural effusion, more fluids filled the chest cavity back up. On top of that, there now appears to be an air bubble. They suspect some air may have gotten into the lung after the second thoracentesis. Oh yeah, did I mention that? Eddie had his lung tapped twice

So what’s the plan now?   

The doctors switched Eddie to the strongest anti fungal available, Amphotericin. This drug is known to put a lot of stress on the kidneys, so Eddie is receiving extra fluids and is being monitored closely. 

In addition to the new anti-fungal, the doctors went ahead and set Eddie up with daily transfusions of granulocytes, a type of white blood cell. 

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White blood cells to the rescue!


Granulocyte transfusions are not very common because 1) it’s hard to get donors; donation and transfusions all need to happen in the same day due to the short half-life of white blood cells and 2) it comes with a host of side effects including fever and shortness of breath. 

The doctors believe that given the fact that Eddie has no neutrophils and that his pneumonia doesn’t appear to be getting any better, the potential benefits of the granulocyte transfusions outweighs the risks. 

I’ve come to think of granulocytes transfusions like a troop of mercenary soldiers, recruited to help Eddie attack a fearsome foe. As mercenaries, they are  unlikely to stick around for very long, but they’ll go in and do the job that they were hired to do. One of the drawbacks of hiring a bunch of mercenaries, though, is that they tend to be a lawless lot of fighters, not overly concerned about the havoc they might wreak. 

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Granulocytes, those tough so-and-sos, take down anything that gets in their way. 


I’m afraid to say that the mercenaries are running amok in Eddie’s body.
Reactions to granulocyte infusions vary between patients. Eddie, unfortunately, is having a rough run. The granulocyte transfusions not only bring about high fevers, but also exacerbate his already terrible cough, causing him to vomit when he coughs. This is what’s known as post-tussive emesis, a fancy term for one of the most awful symptoms ever. 

So, far nothing they’ve tried has helped subdue the cough.   

Depending on the availability of donors and Eddie’s ability to withstand all the side effects, the doctors plan to transfuse Eddie with granulocytes for up to 7 days. 

Today makes day 3.   

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Oh boy. A lot more steps to go. 


Eddie’s trying to fight through all the pain ad exhaustion, but sometimes it’s hard. Really, really hard.  

We’re are all trying to steel ourselves and stay focused on the bigger picture, the road to BMT transplant, but sometimes it’s hard. Really, really hard.   

Hard doesn’t mean it can’t be overcome. It’s just…hard. 

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I probably won’t get a chance to write another update until after Eddie gets through these granulocyte transfusions. Please know that we’re holding strong and are confident that we’ll get over this hump. 

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Strong like a bull (or Celine Dion). 


I’d like to end this post with an expression of deep gratitude to the generous strangers who donate their granulocytes. These people have to come in on short notice and receive a needle full of growth factors before each donation, and if they’re willing, may go to the Blood Bank and donate as often as three times in a week. 

I’ve donated blood a number of times never fully understanding what a significant impact such a singular act can have. I certainly will never again take that opportunity to help someone in need for granted. 

To all you kind souls who have shared or will share a part of yourselves with Eddie so that he can fight his way back to health, this gif is for you.

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Eddie vs Pleural Fluids & Staphylococcus

Eddie’s status: back in the hospital; admitted for a high fever Friday evening; fevers seem to be due to a bacterial infection in his blood, an infection he is currently being treated for; meanwhile, docs are trying to sort out his lung situation

It’s becoming harder to write updates because things are getting a bit complicated –  not necessarily worse, just complicated. 

This post is going to be pretty lengthy so you’ll want to pull up a chair and make sure you’re comfortable. :) 

Here we go…

I’ll first begin with the newest development. After exactly a week out of the hospital, Eddie spiked a 101.6 degree fever that instantly earned him a trip to the ER. If you’re neutropenic like Eddie is, you need to get on top of the fever stat!

Initially, the docs theorized that the fevers were due to the infusion of platelets he had received earlier that day. It is not uncommon for people to spike a fever or break out into hives after an infusion of blood products. However, they couldn’t be sure so they had to they quickly set him up on some strong antibiotics. 

Per protocol, the ER docs had Eddie start on a trio of broad antibiotics: aztreonam, ciprofloxacin, and vancomycin. 

Vancomycin. Eh, wait a minute, doctor.

Eddie’s been on vancomycin many a-times now, but we associate it with his nausea-ridden days, so we can’t help but feel a little nervous whenever he’s back on the strong antibiotic. 

This time our nervousness prove to be founded…

We spoke to the ER pharmacist about our concern that it was vancomycin that had exacerbated Eddie’s nausea. She reassured us that nausea is not an associated side effect of the drug. Thus, they went ahead and gave him a loading dose of vancomycin through IV. About an hour into the infusion, he broke out into a faint pink rash on his upper body. 

Another drug rash? Eddie was having none of that!

After what we experienced with the Zosyn drug rash, we immediately alerted the ER staff to the rash that was breaking out on Eddie’s upper body. They quickly paused the Vanco. 

Later that evening (or I guess, technically, early morning), once Eddie was admitted into the Oncology unit, they determined that Eddie had experienced a known reaction to vancomycin called Red Man Syndrome. Given this new information, they decided to try the vancomycin, only this time at a much slower rate of infusion. 

What do you think happened? 

Yep. You guessed it. More rash.

We told you we don’t like that vancomycin. 

The doctor reiterated the fact that the rash was a reaction to the vancomycin, not an allergy. However, given Eddie’s state, they decided to pause and find other alternatives. 

Some overnight blood work revealed that Eddie has a staphylococcal infection in his bloodstream, a type of skin staph. The good news is that this type of infection is quite easy to treat with antibiotics. In fact, by my counts, this is Eddie’s third time getting this particular type of infection since being diagnosed. 

In the past, Eddie was given vancomycin to treat the infection. This time, however, they decided to go with a combo of two other antibiotics called cefepime and daptomycin. So far, Eddie continues to spike fevers, but we probably need to give the antibiotics at least another day before we start seeing a difference. Meanwhile, the doctors have ordered susceptibility tests to figure out which particular meds get at the bacterial infection best. 

And then, there’s the pneumonia. 

If you’ve been following Eddie’s Aplastic Anemia saga, you’ll recall that in addition to this new infection, Eddie’s been grappling with a fungal pneumonia for the past three weeks, a pneumonia that is preventing Eddie from starting the BMT transplant process. 

Prior to this recent hospitalization, we met earlier this week with the doctors at the SCCA, and we learned that the status of his pneumonia is unclear due to the accumulation of more fluids in his pleural cavity. 

I created this graphic to help me illustrate the situation in his lungs. Please do not let the sophistication and the anatomical accuracy of my drawing fool you. This is simply my interpretation of what we the doctors explained to us. Nothing is drawn to scale. 


On Tuesday (4.5), Eddie underwent a CT scan of his chest. As I mentioned above, the CT image showed that more fluids had accumulated in the pleural cavity and was obstructing the view of the pneumonia. The doctors had no way of knowing if the pneumonia in Eddie’s right lung was improving. 

On top of that, they also noticed more “ground class opacification” (yes, that’s a technical term) on his left lung. The “ground class” has apparently been seen on previous CT images so the Infectious Disease doctors don’t seem to be overly concerned about the left lung. They do however, need to know what’s happening in the right lung, so their first course of action was to drain the effusion in his right lung through a procedure called a thoracentesis.  

Eddie was scheduled to undergo the thoracentesis this coming Monday as an outpatient at the UWMC, but thanks to the unexpected skin staph infection, he was able to get the procedure done this weekend. The one perk of being hospitalized. The doctors come to YOU!

The long and the short of it is that the doctor drained about a liter of fluid from Eddie’s right lung plus a few syringes full of the fluid for lab testing. Eddie will undergo a CT scan at some point (probably tomorrow), but that has yet to be scheduled. We won’t know how the pneumonia is looking until that scan happens. 

The good news is that the terrible cough that has been keeping Eddie up for the past week has gotten a little bit better. Thanks to the draining, those potent cough syrups they keep prescribing are actually making some impact. That means that Eddie’s been able to manage a couple of hours here and there, more than the 15-minute intervals of sleep he’s been subsisting on.  

Also, today he walked over a mile around the hospital wing without feeling short of breath. That would have a been a near miracle just a day a go. 

I think it’s too soon to say that Eddie’s pneumonia is getting better, but given these small feats, I’m cautiously optimistic that the situation in his lungs may be better under control. 

To top it all off, he managed to eat half of a crunchy Supreme Taco. 

From apple sauce to Taco Bell. Eddie sure likes to take risks!

All in all, it’s been a weekend of tiny feats! Keep your fingers crossed that we continue this positive streak. 

Mom, Dad, Anna -- I love you.

I have a lot of anger inside of me right now. This disease has taken it’s toll physically, but even worse, the emotional impact has really started to get to me. This post started out much differently. All I wanted to do was spew hate and discontent for being placed in this awful situation and putting my family through so much – but I decided to pull back. I deleted the paragraphs full of expletives and thought to myself, this isn’t the time for negativity, even though at times that’s all I feel. Yes, my body has been ravaged, but I’m still somehow standing. Yes, the pain I’ve experienced has been the worst I’ve ever had to endure, but I’m still somehow standing. Yes, this is the most scared I’ve ever been in my entire life, but I’m still somehow standing.

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Hyper pigmented skin, stick figure arms, bruised and scarred all over, distended belly and swollen feet/ankles due to edema, skin rash… and yet I’m still standing.

I’m still standing because of three very precious individuals.


MOM

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In Korean culture, kids have a special relationship with their mothers. This is typically because Korean men (fathers) are usually the sole breadwinners, and so it’s on Mom to raise the kids. My dad worked a lot when I was a child, so I didn’t see him as much. Accordingly, my mother did most of the child rearing during my elementary years. The twist is, my mom also worked full time to help support the family, while raising me. It couldn’t have been easy, and she’ll try to convince you that she made a lot of mistakes as a mother. She had me when she was very young – and the so called mistakes are more than understandable given she was barely in her early twenties when we emigrated to the United States. As an immigrant with limited English skills, my mom worked as a housekeeper for a few different motels and inns. Basically earning minimum wage, cleaning up after people’s mess. It was physical work. I remember as a child, I didn’t get “summer vacations” so I’d follow my mom to work quite often since we couldn’t afford a babysitter. I’d spend many hours in the laundry room of the inn my mom worked at, eating snacks and trying to listen to the TV over the loud noise of the industrial laundry machines. Even when I smell fabric softener today, I’m reminded of those days – waiting for my mom to finish cleaning the rooms so we could go home in the afternoon. Sometimes, as a treat, my mom would be able to let me into an empty hotel room so I could watch cable TV without all the laundry machine noise. While all my friends were at camp or Disneyland for the summer, I followed my mom to work, and yet these are some of the fondest memories I have as a child. My mom cleaned rooms for a living, but was always proud of her work. For that I love her immensely.

My mom continues to do physical work, but at a hospital. Pushing around a cart just like back in the day. She says she likes it, but I feel bad because I know her body can’t keep it up forever.

Right now she is on leave from work to take care of me and accompany me to my visits to the clinic every day. A month or two back, I remember holding my mom’s hand at the clinic and noticing how rough and cracked her skin was and how swollen her hands looked. I started to tear up. She sacrificed a lot of her youth to give me a good life, including her once pretty hands. Years of pushing carts and vacuum cleaners, but happy to have a job. This is true sacrifice. This is a good mom. The best mom. I love you mom.


DAD

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My dad’s not a large man, but he’ll always be seven feet tall in my eyes, towering over me as I hold onto his leg as a little boy. I’ve always looked up to my father and told myself – If I grow up to be half the man he is, I’ll be okay.

If you ever meet my dad, you’ll notice he’s a man of few words. His side of the family must live by the mantra: actions speak louder than words. As I mentioned, my dad worked a lot when I was growing up. For the first few years we lived in the US, I remember he’d come home from work to eat dinner and then head back to the dental lab until the early morning. He basically worked 24/7. No weekends. No vacations. He did what he had to to do to put food on the table and a roof over our heads. I of course missed seeing him. What boy doesn’t want to spend time with his father? But I never once resented how much he worked. It was so painfully evident that he would have rather been home and was making a huge sacrifice for me and my mom. He never made it to many of my little league baseball games, but I remember as a kid, I had to have this certain glove and certain baseball bat. Both were not cheap. He didn’t flinch to buy me whatever I wanted. Not because he felt guilty, but because he wanted me to have everything he couldn’t have as a child (my father grew up incredibly poor). 

Looking back, I know I was spoiled as an only child – but if one good thing came from being spoiled, it’s having a clear picture of what a strong work ethic is. My father has the strongest work ethic of anyone I’ve ever met and I hope to emulate that. My dad worked hard to give me all the opportunities he never had, like attending college and grad school. I will follow his example and do the same for my kids someday.

My dad’s my hero. He’s Korean MacGyver (he can fix anything). He has a tough love approach to my journey to recovery which can be hard at times, but necessary I’m sure. Thank you dad, for your mentorship, your unrelenting example of what it means to be an honorable person, and for the sacrifices you continue to make for our family. I love you dad. 


ANNA

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It’s actually hard for me to start writing this without having hot tears streaming down my face. Anna. The love of my life. Where do I even begin.

If my parents are the ones holding my up by each side, it’s Anna who is gently pushing me forward to get better. 

When I first started dating Anna, I didn’t know what to make of her. I didn’t know someone so beautiful, warm-hearted, smart, and funny could exist in the world – and yet here she was. For whatever reason, giving me the time of day. 

I don’t know what she sees in me, but I stopped questioning her reasons for loving me a long time ago. What is clear to me is that her love is unconditional. Something I’ve never experienced before from anyone aside from my parents. For those of you who have someone like this in your life, I’m sure you’ll agree – the feeling is inexplicable. Having someone love you and pick you up when you’ve hit rock bottom.

I never really believed in soulmates until I met Anna. I don’t even know if I told her this, but I fell in love with her the first day we met – and my feelings for her grow stronger each day. She is absolutely my soulmate. I distinctly remember early on in our relationship, vowing to myself that I would spend the rest of my life trying to make her happy and protecting her from all the bad things in the world. Unfortunately, I don’t know think I’m living up to my promise. Now that I’m sick, it’s Anna who has stepped up and taken care of me along with my parents. She is a gift sent from heaven. My mom and I say this almost daily. Without her, I don’t know where my family and I would be right now. 

I’m writing the least about Anna because there are too many precious memories that I want to selfishly keep to myself at this moment. I hold onto these and think about them when I’m at my lowest and darkest.

It’s hard not to feel bitter sometimes. To be missing out on the life we once had before I got sick – but as she’ll tell me over and over, this is temporary. We’ll get back there soon and we’ll appreciate life even more. She’s right. 

I’ve learned so much from Anna in the relatively short time I’ve known her, and she makes me want to be a better person every day. I hope I can one day give her everything she deserves in life. She’s my everything and I adore her to the moon and back. I love you Anna. More than you’ll ever know.


Cherish the special people in your life. You can never tell them too often how much you appreciate and love them for all that they do for you.

Cheers,
Eddie

Still in the fight.

Update: Eddie vs Pneumonia and a Bunch of Other Things

Eddie’s status: He’s out of the hospital and back at home; fevers are gone; drug rash is going away; edema is subsiding; very worn down but focused on getting better

Sorry for the lag in updates. The past three weeks have been quite eventful. So much has happened; it’s a bit hard to figure out where to begin. 

After 17 days in the hospital, Eddie’s primary care team cleared him to go home.  (He was discharged on April 1st)

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He hasn’t fully recovered from the pneumonia, but he’s doing better. Here’s a follow up to my last post about his pneumonia and his 99 other problems:

1) Pneumonia. Chest x-rays still show signs of pneumonia, but according to the docs, it can take awhile for the chest x-rays to clear. Based on the fact that the pneumonia doesn’t seem to be spreading and that Eddie is no longer having fevers, the doctors decided to send Eddie home. 

2) Drug rash. So, Zosyn, the presumed culprit of Eddie’s drug rash has now been added to Eddie’s list of allergies. Penicillins are important, but that particular drug really did not suit Eddie. Thankfully, the drug rash seems to be on it’s way out. Now Eddie just has to contend with lots of skin peeling in all the areas the drug rash covered – basically everything from his neck down. Poor Eddie. Molting is no fun. 

3) Edema. Man, after the pneumonia, I think the swelling from all the excess fluids in Eddie’s body was probably the worst part of the past couple of weeks for Eddie. The swelling in his legs in particular caused him a lot of pain. He managed to get a lot of the swelling down through a combo of diuretics, keeping his legs elevated, walking, and a pair of compression socks. The socks did a good job of reducing the swelling, but it also left Eddie’s legs bruised and all purpley. This is one of the great ironies of Eddie’s life right now. The very things meant to help him with an ailment, come with their own side effects, requiring additional treatment. 

4) A second infection in his lungs? The doctors did not find any signs of another infection. We’re still not certain what the deal is with those spots they noticed on his left lung, but the docs don’t seem to be overly concerned. They said it did not look like the pneumonia had spread. We’ve asked repeatedly about these spots, but I get the feeling we’re just not asking the right questions, because it’s still not clear to use what the deal is with those spots. It can get a little frustrating at times, but I think for now, we’ll just take comfort in the fact that the spots on his left lung don’t pose a problem right now.

5) Deconditioning. 2.5 weeks in the weeks in the hospital has left Eddie feeling extremely fatigued, weak, and overall really crummy.  Between regular vital checks throughout the day, a revolving door of doctors and nurses, a constant stream of transfusions, coughing, pain, a steady regimen of diuretics that make him pee frequently, and two Code Blue events, it’s been nearly impossible for Eddie to get more than two consecutive hours of sleep while in the hospital. Please don’t mistake this for complaining. All of the aforementioned activities are essential to Eddie getting better. It’s just that a major consequence of all of this care was that Eddie took a major hit in both morale and sleep. 

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As mentioned though, the good news is that Eddie’s back at home. Though he’s still grappling with a really bad cough, swelling in his legs, the aftermath of the drug rash (flaking skin + bumps all over his legs due to inflammation in his sweat glands), plus all the general fatigue and lack of appetite, he can finally return to some sense of normalcy. Well, at least, what’s become the new normal. He can loll about in his own bed. Take a walk around the house. Pee without everyone knowing his business.  

Now Eddie needs to focus on getting transplant ready. What does that mean exactly? We’re still figuring that part out. The main thing though is for the Infectious Disease doctors over at the SCCA to determine that his pneumonia is “getting better.” He’ll undergo a CT scan of his chest this week, so hopefully we’ll have more information then.  Also, Eddie needs to focus on strengthening his body by taking lots of walks and eating solids so that he can get off of the TPN (i.e. nutrition in a bag).  

I can’t lie. These past few weeks have been rough on Eddie, probably the roughest he’s experienced thus far since being diagnosed with Aplastic Anemia. He’s still hanging tough though. On a positive note, he also discovered a few new things that make Aplastic Anemia life somewhat more tolerable. 

I will leave with you Eddie’s favorite things for Spring: 

1. Hermell Products Elevating Leg Rest

This leg rest is far superior to a stack of pillows if you’re trying to keep your swollen legs elevated above your heart. 

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2. Uniqlo Airism Boxer Briefs

Eddie probably doesn’t appreciate me revealing what kind of underwear he’s rocking, but given how comfortable he says they are, I feel like you men out there need to know about these briefs by Uniqlo. Very breathable and no chafing. 

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3. Ginger Delights

Eddie’s nausea has taken a back seat, but when it was running rampant and the nausea meds weren’t working/available, he found that these ginger pastilles really helped to keep the nausea at bay. I found these from Cost Plus. Good ol’ Cost Plus, a treasure trove of random things. 

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Eddie vs Pneumonia: An Update

Eddie’s status: Still in the hospital being treated for pneumonia. And a drug rash. And major swelling all over his body. And possibly another infection. :/

It’s been twelve days since Eddie was admitted to the hospital for pneumonia, and it’s hard to tell if he’s getting any better. I’m sorry to say that his already complicated situation has only gotten more complicated. 

I know in my last post I celebrated the fact that Eddie’s nausea has subsided, but the nausea has since been replaced by some other setbacks. 

Unfortunately, this is one of those posts where I get more real about Eddie’s condition. If you’re faint of heart, you should probably skip this one, and wait until I let you know that Eddie’s doing better. 

Here’s what we know so far. 

1) Eddie has pneumonia. If you’ll recall from my first post about Eddie’s pneumonia, his primary team of doctors initially believed the pneumonia to be the result of a bacterial infection and thus, treated him with a potent combination of Zosyn, a penicillin, and Vancomycin, an antibiotic. However, despite a few days on the drugs, Eddie continued to spike fevers. On top of that, the sharp pain in his right chest/back seemed to only worsen. This led the Oncology team to consult specialists from both Pulmonary (lungs) and Infectious Diseases. “If it isn’t an antibacterial infection, then what is it?” they wondered.

2) Eddie’s pneumonia is due to a fungal infection, caused by a common mold called Aspergillus. This species of mold is apparently everywhere. Most of us have aspirated this fungi at one time or another and it’s not a big deal because our immune systems can take care of it. However, when you have a compromised immune system like Eddie does, it’s a big deal. In fact, everything is a big deal when you have Aplastic Anemia. The fungal infection was discovered after Eddie underwent something called a bronchoscopy, a procedure in which they put a scope down his trachea in order to obtain a sample from Eddie’s lungs. The bronchoscopy almost didn’t happen due to some differing opinions amongst the 10+ doctors consulting on Eddie’s case. Thank goodness it happened though, because it revealed that his pneumonia was in fact a fungal infection, not bacterial as initially thought. As a result, they switched up Eddie’s meds to some very strong anti-fungal meds, one of which has some interesting side effects. 

3) Eddie is seeing visions. One of the anti-fungals Eddie is on, voricanozole, is known to have some unique side effects, including “visual disturbances”, such as a sensitivity to light or a problem seeing colors. According to the doctors, it has also been known to cause very vivid dreams. In Eddie’s experience, he occasionally has these visions when he’s partially awake. Somewhat akin to lucid dreaming, he knows that what he is seeing is not actually happening. Eddie said that he once envisioned me and his mom walking down a road looking at a bunch of crafts and wares, like the stuff you’d see on Etsy. On a few occasions, he says that my hair looked purple. Apparently, I look pretty decent with purple hair. 

4) Eddie has a gnarly drug rash. I don’t recommend that you google ‘drug rash’, but if you do, you’ll see that drug rashes look really scary. This rash is a frightening shade of pink and covers most of Eddie’s body, but is especially harsh around his appendages and belly. The doctors suspect that the penicilin, Zosyn is the cause of Eddie’s drug rash so they have since pulled him off the drug. Unfortunately, a drug rash can linger for a few weeks even after eliminating the offending drug. I also learned from one of the nurses that drug rashes can also sometimes lead to fevers. As if, Eddie didn’t already have enough reasons his body might spike a fever! The drug rash varies in it’s intensity, so it’s really hard to tell if it’s getting any better. In the meanwhile, the dermatologists prescribed Eddie with a lotion to help ease some of the irritation. 

5) Eddie has some major edema, the medical term for swelling. Imagine your body covered in a bright, angry rash. Now, imagine that rash-covered body, swollen. Yeah. It’s very uncomfortable. There’s a lot of swelling going on right now in Eddie’s body. Currently as I write this, he has swelling in his face, his arms, his hands, his belly, his thighs, his legs, and his feet. Since being admitted to the ER, he’s gained around 25 pounds, most, if not all of which, comes from fluids. 

From what I understand of what the doctors have told us, fluids have been accumulating excessively in Eddie’s tissues and muscles and not passing through his blood vessels as they should be. Consequently, in addition to swelling, this accumulation of fluid also contributes to Eddie’s low blood pressure. I could be wrong, but some of this fluid buildup may also be due to some kidney issues Eddie has had on account of all the heavy meds he’s been on since starting his treatment for Aplastic Anemia. For now, the doctors have instructed Eddie to keep his feet elevated (above his heart), wear compression socks, and go for walks to help alleviate some of the swelling. 

6) Eddie has accumulated fluids in his pleural cavity, the area surrounding his lungs. Now, I’m not sure if the fluid accumulation in his chest cavity is related to the excess of fluids in the rest of his body, but recent X-rays have shown that there’s a lot of extra fluid around Eddie’s right lung, the one with pneumonia. A thick concentration of fluids in one area would indicate an infection in the pleural space. The good news is that the fluids are free-flowing. On the other hand, the doctors are not certain if these fluids are hindering the anti-fungals from getting at the pneumonia in his right lung. Right now the plan is to tightly monitor what’s going on in Eddie’s chest through regular X-rays as well as wait and see if his fevers go down. 

7) Eddie may or may not have a respiratory or viral infection. A CT scan of Eddie’s face and neck revealed some new spots on Eddie’s left lung. The nature of these spots are still unknown, but the doctors are concerned that it might be a sign of another infection. I know. WTH! Can’t the universe cut a guy a break?!

The doctors suspect that the spots may be signs of a respiratory or viral infection because Eddie’s already on some super strong anti-fungals and antibiotics. It would be very “atypical” for him to acquire another fungal or bacterial infection. 

Eddie took another series of chest X-rays this evening, so we’ll have to wait until tomorrow for the results. 

Here’s a visual summary of what’s going on in Eddie’s lungs right now. 

As you can imagine, Eddie has got a lot going on right now. He’s like the Jay-Z of infections right now - he’s got 99 problems but a normal immune system ain’t one. 

We’re fortunate that Eddie is under the care of an extremely dedicated and smart group of nurses and doctors, all intent on helping Eddie get better. Unfortunately, his Aplastic Anemia, the condition underlying all of his current afflictions, makes “getting better” an incredibly complex challenge, rife with all sorts of unexpected obstacles. 

The good news is that Eddie is not spiking as many fevers as he used to. The problem is, the fevers aren’t gone completely. Fevers are the number one sign that things are not right in his body. 

I can’t say that Eddie has defeated his pneumonia yet, but the fight’s not over. It’s pretty remarkable how, despite everything that is ailing him, Eddie is pushing through the pain and trying to do whatever he can to strengthen his body. In fact, the doctors keep saying given all that he’s got going on, he’s looking ‘pretty well.’

I know Eddie’s condition sounds pretty dire right now, but we know that he will get better. He’s going to fight the pneumonia with everything he’s got! Things might get ugly, but he’ll end up on top. 

So, with that, let me leave you with some of Eddie’s triumphs from the past couple of  weeks. 

Do you remember that incentive spirometer? Eddie reached up to 5.98 seconds! The Pulmonary doctor says that Eddie is one of the best he’s ever seen. (I, who am pneumonia free, tried it and barely got to 3 seconds.)

Eddie kicked nausea to the curb and managed to take in some solid food!

Lastly, Eddie turned another year older! Ever the gentleman, he humored us by posing with the world’s cheesiest birthday balloon. 

Eddie vs Nausea

Eddie’s status: Today Eddie ate a tangerine. 

I’ll tell you why this is a big deal. 

For the past month and half, Eddie has been plagued by nausea and a loss of appetite. It’s gotten to the point where he hasn’t able to tolerate anything more than periodic sips of apple juice and water. Even most of his meds, normally taken by mouth, had to be switched over to IV because he just couldn’t keep anything down. 

The doctors suspect that Eddie’s gut issues are due to some GI bleeding and/or a side effect of all the heavy meds that Eddie has been on. Despite their best efforts, they could not figure out the exact cause of Eddie’s nausea or his severe loss of appetite. To be honest, we all kind of resigned ourselves to thinking that Eddie wouldn’t be back on solid foods until after his bone marrow transplant. 

But, then, a surprising thing happened today.

I was eating some sliced apples this morning, and out of habit, I said to Eddie, “Mmm. These are really good. You want some?,” knowing that he would say no. To my surprise, he said, yes, he wanted to try some.

Unfortunately, Eddie couldn’t have any apple slices because we quickly recalled that he was under NPO (”nothing by mouth”) status in preparation for a possible bronchoscopy. However, later in the day, when they pulled the NPO order, Eddie helped himself to a little snack: a bite of a Korean snack cake and a whole tangerine! 

Eddie was like, hmm, this food tastes pretty good. Doesn’t make me want to gag.

For dinner, he had a small portion of rice, meatballs, and kimchi. Can’t keep a Korean from his kimchi!

Eddie’s still in the hospital being treated for his pneumonia, but the fact that he’s able to eat, even if it’s just a few bites here and there, has sure given us all an extra boost in morale. 

Who would have thought that one of the positives of coming down with pneumonia is that Eddie’s gut issues have been derailed? (That’s probably not true, but the timing sure makes it seem that way). 

Nausea is something that Eddie will likely have to grapple with again because of the myriad of drugs he’s on and his eventual chemotherapy, but this reprieve from the nausea, however long it may last, is much appreciated and will not be taken for granted.

In the mean time, let us hope that Eddie gets a break and can enjoy some birthday cake tomorrow!

Eddie vs Nausea – 

Eddie FTW! 

Eddie vs Pneumonia

Eddie’s status: Still in the hospital with pneumonia. 

Despite the heavy regimen of Vancomyacin and Zosyn for the past 5 days, looks like the pneumonia is not backing down. Eddie continues to spike a fever, requiring him to take Tylenol around the clock to keep his temperature in check. Also, the excruciating pain in his chest area came back with a vengeance last night. Needless to say, the past 24 hours have been quite a doozy for Eddie. 

Based on images from CT scans of his chest and abdominal area, the doctors believe that there is an abscess in his right lung, likely caused by a bacterial infection. The exact nature of the marks they see on his chest images is still being determined, but that’s their current theory. 

The way I understand it is there’s a piñata full of debris and fluid positioned somewhere near the border between his lung and diaphragm, causing Eddie a lot of pain whenever he inhales or exhales– oh, you know, just whenever he breathes. No biggie.  

While the doctors work on getting to the bottom of Eddie’s pneumonia conundrum, they’ve impressed on us the importance of Eddie taking deep breaths.  These deep breaths open up his chest and can help clear out some of the gunk that’s built up.


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I know what you’re thinking, wait, what? But, it hurts when he breathes! 

You’re right. It hurts a lot. Eddie describes the pain akin to being stabbed with a knife.

In order to help Eddie cope with the pain, the doctors set him up with a PCA, a patient-controlled analgesia pump that dispenses a potent narcotic pain med called dilaudid. At the push of a button, Eddie can dispense a small dose of the dilaudid to help him immediately counter his pain symptoms. 

I know the thought of a patient being in control of a strong narcotic sounds iffy, but the PCA has been extremely helpful as it allows him to receive the pain relief when he needs it as opposed to waiting hours between each full dose. 

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Eddie and his entourage of drugs, including the PCA filled with dilaudid 

In addition to pain management, the doctors have tasked Eddie with exercising his lungs through a device called an Incentive Spirometer. He has to keep the yellow cup afloat for as long as he can on a single inhale. 


Eddie reached a personal best of five seconds! 

The meds and exercises will hopefully help clear out some of the debris and liquid in his lungs, but Eddie’s team of hematology/oncology doctors still need to figure out more about the culprit behind his pneumonia. Is it bacterial? Fungal? Maybe something not yet discussed? 

Tomorrow he’ll be examined by the pulmonary (lung) doctors and undergo a bronchoscopy where they will stick a scope down his trachea and grab some sputum sample from his lungs. The hope is that the sputum cultures will provide more empirical data on the specific nature of Eddie’s pneumonia. 

As for the bone marrow transplant, all plans are on hold until they take care of Eddie’s pneumonia. Or, at least, that’s what we’re assuming. We haven’t really heard from the transplant team. 

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Pneumonia is an unfortunate setback, but Eddie is holding strong. Once he takes down the pneumonia, he’ll get back to fighting his Aplastic Anemia. 

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Take that, pneumonia!

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Alas, Eddie’s bone marrow transplant kick-off has been delayed thanks to some pesky bacteria that managed to find their way into his lungs. 

We checked into the ER Tuesday evening, the night before Eddie’s scheduled “Arrival Date”, his official handoff to the Bone Marrow Transplant team.

This was Eddie’s third time going into the ER for a fever, so by now we’ve learned the drill. First, the ER staff checks your vitals, hears your story, and then takes some blood cultures and chest x-rays. Then, because they know that you are neutropenic they efficiently ply you with some broad antibiotics like Vancomyacin and Zosyn to quickly attack whatever bacterias running amok in your body. 

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Just keep shooting and hope you get those suckers. I guess that’s a good plan…

Chest rays, Eddie’s persistent cough, and a sharp pain that radiated from his chest to upper back all point to some inflammation in his right lung. The doctors tell us that Eddie has pneumonia. 

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Bacterial infection in the lungs :(

When you have Aplastic Anemia, it’s pretty hard to avoid infections, especially when you have to go to a bustling clinic every single day, like Eddie does. No matter how careful we are to wash our hands and avoid people and their germs, Eddie is still vulnerable.

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Germs be everywhere. 

Eddie was actually doing pretty well for the past 10 days at home. Unfortunately, his body has the uncanny ability to get sick just when he’s scheduled to meet the Bone Marrow Transplant team. The Bone Marrow Transplant doctors have become a gang of mythical creatures to me, like a pack of fairies we keep hearing about, but have yet to see with our own eyes.

No worries, though. We shall meet with them when Eddie’s feeling better.

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Bone Marrow Transplant Team, we’re coming for you!

Eddie is still running a fever so that means they haven’t gotten a handle on the infection yet. We’re hopeful that the steady regimen of antibiotics they got him on will take care of business.

I will keep you all posted. In the mean time, send positive thoughts our way, please.

If you’re just tuning in...

Hi folks. Eddie here. 

I’d like to take this opportunity to get you caught up on what’s been going on for the past four months since my diagnosis – but before all that, I’d like to provide some fair warning. Anna and I thought it would be a good idea to start this blog in order to keep loved ones abreast of my road to recovery. The intent is to provide real time information about my treatment, inject a little humor when we can, and perhaps provide a little inspiration if possible. Having said that – the simple truth of the matter is, Aplastic Anemia is a terrible and debilitating disease. Some of our my posts (like this one) may depress you, as I describe a few of the difficulties I’ve been experiencing. While it may be cathartic for me to write about how awful I feel, I realize it’s a bummer to read about. So for that, I apologize in advance. Feel free to skip these posts if need be. I promise not to get offended.

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Moving on…

So what exactly happened? How did I get diagnosed with AA? (I’ll try to make this as brief as possible, but it’s a long story). Right around Thanksgiving last year, I noticed my hair start to fall out in alarmingly large clumps. I felt physically and mentally fatigued for no apparent reason. After a couple trips to urgent care and my primary care physician, I had my blood drawn and tested to see what was going on. A couple days later I got a serious call from the clinic. The doctor informed me my platelets, red blood cells, and neutrophils (white blood cells) were at critically low levels. I’m promptly instructed to have someone drive me to the emergency room, and to take care not to fall, bump my head, or cut myself, since I’d bleed out and potentially die.

Fast forward a couple hours to the ER and subsequent admission to the hospital. The hematology/oncology (blood/cancer) doctor informs me that based on initial tests, I most likely have Leukemia. Later, when no one is looking, I Google “chances of surviving Leukemia” on my iPhone. 

Fuck.

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Fast forward another couple of days and I find myself with a giant, thick-gauge needle jammed into my lower back, digging through my hip bone to aspirate a core of bone marrow for biopsy. Another few days go by.

When the results from the biopsy are finally back, doctors tell me they were unable to detect any cancer cells in my bone marrow. 

That was a relief, and still is, since my disease is not considered malignant. Instead, I’m told I have something called Aplastic Anemia. I suppose it’s the lesser of two evils, but I’d soon learn how tough of a diagnosis that would be. As Anna mentioned, AA is pretty rare so there isn’t a ton of medical research out there on it. Treatment can also be pretty difficult since the disease affects individuals so differently. The majority of cases are considered idiopathic, which means doctors can’t determine how or why some people get the disease. It can be acquired (exposure to something nasty like chemicals, radiation, viruses) or inherited (your DNA predisposes you to AA). I’m told my AA was probably acquired.

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Doc: Actually, you don’t have cancer. You have Aplastic Anemia.
Me: Umm… Hooray?

At this point, the doctors have told me they will move forward with an immunosuppressive drug therapy regimen. The thought is, since my immune system is what’s “attacking” my bone marrow and not allowing it to make blood cells, let’s use drugs to suppress the immune system and give my marrow a chance to recover.

The bad news, it didn’t work. The worse news, my body took a thrashing in the process. For every drug that’s been injected or swallowed, if there was a negative side effect, I think I got to experience it. Severe stomach pain (enough to go to the ER and get shots of morphine), mouth sores, gingival hyperplasia (an overgrowth of gums in the mouth – Google it if you’re feeling adventurous), hand tremors, muscle and joint pain, headaches, stomach ulcerations, nausea, vomiting, loss of appetite… These are just the ones that come to mind right now.

The reality is, I’m pretty sick – and I look the part too. Bald head, pale face, dark circles under my eyes… Before AA, let’s just say I had a healthy appetite for life. I was probably weighing in around 200+ pounds. Now, just a few months later, I’m down to 165 since I’m unable to eat (I get my nutrition overnight through an IV that I hook up to this tube/needle thing called a port that sticks out of my chest 24/7). The worst part is the weight I’ve lost is all muscle mass. I have this disproportionate layer of fat over basically no muscle. I’m officially skinny fat.

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When I look in the mirror (except with less hair on my head)

Needless to say, the past few months have been the absolute roughest of my entire life (and for those who know me, I’ve been through my fair share of tough times). I’ve lost count how many times I’ve had to go to the ER (they actually treat me like a VIP there – I basically go to the front of the line and get a room with a bed, when others have been waiting for hours – perhaps the only perk of Aplastic Anemia, haha). I’ve definitely spent more days admitted to the hospital than at home. Hospital stays suck. It’s noisy, and you’re constantly bothered even in the middle of the night by a nurse who needs to check your vital signs, take some blood samples, shove some pills down your throat, or infuse you with platelets. (Don’t get me wrong. I actually have an enormous amount of respect for nurses and the hard work they do. I just tend to sound bitter when they don’t let me sleep).

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Arriving at the Emergency Room like…

I do have my good days, and I try to stay as positive as I can, or at least smile and put on a strong face for others. Honestly though, life these days can be pretty miserable. I often feel like I’m on one of those dizzy-spin carnival rides that make you sick to your stomach and hate life. I know that in due time the spinning will stop and I’ll be allowed off this ride, but until then… round and round she goes.

So what’s gotten me through all this? How am I still standing? What’s prevented me from having a complete mental breakdown?

My caregivers, who also happen to be the three most important people in my life. My mom, my dad, and Anna. Lifesavers is probably the more appropriate term.

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I plan to dedicate my next three blog entries to each one of them so stay tuned for that. I promise you I’ll write something a little more uplifting, or at the very least, not so bleak.

And if you were able to make it through the end of this long post, despite me being such a bummer and opting to utilize my always under-appreciated stream of consciousness writing style… Thank you. 

Cheers,
Eddie

Still in the fight.

Hwaiting, Eddie!

Hello friends, family, and internet strangers,

This blog is dedicated to chronicling Eddie’s epic battle against Aplastic Anemia and his road to recovery.

If you’re reading this blog, you probably really care about Eddie and want to know how he’s doing or you scoured the web for all things Aplastic Anemia and stumbled across this blog. Whatever your reason is, we appreciate your interest in Eddie’s story and we hope that you will take comfort in knowing that Eddie is a fighter, trained to push through the hard times, and blessed with a strong support group of  family members, friends, and healthcare professionals.

I, Anna, Eddie’s partner in crime and co-writer of this blog, will do my best to keep you updated on Eddie’s journey and hopefully share some insight into what it’s like to battle something as crazy and obscure as Aplastic Anemia.

Speaking of which, what the heck is Aplastic Anemia, you wonder. Don’t worry. Neither of us had heard of it either.

Here’s what Eddie felt when he was told he had Aplastic Anemia.

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Aplastic Anemia is a rare condition in which your bone marrow stops producing blood cells — that includes white blood, platelets, and red bloods — the whole shebang. Fortunately, you can boost your level of red blood and platelets through transfusions in the short term. White blood cells, unfortunately, can not be infused. When your white blood cell count drops down to zero, like in Eddie’s case, you’re classified as neutropenic. This is a big deal because your white blood cells are what fight off infection and bacteria. I know.

Ay carumba!

Aplastic Anemia is so rare that it’s estimated that 4 out of every 1 million people in the U.S. are diagnosed with Aplastic Anemia. Man, if only we had had such luck with the Power Ball!

You can imagine when Eddie was diagnosed with Aplastic Anemia. We were like, “Oh, good. It’s not cancer, but it’s what now!?“ 

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Eddie’s diagnosis and early treatment efforts make for an interesting tale, but I will have to save that for another post.

The big news this week is that Eddie’s doctors have concluded that the ATG drug therapy he was on for the past few months did not work, and now it’s time to try a bone marrow transplant.

A BMT is certainly no walk in the park, but we hope that it’s the thing that will cure Eddie of his Aplastic Anemia. Bone Marrow Transplants are currently the only thing that have been proven to cure Aplastic Anemia completely. 

There are still a few weeks of consultations, exams, and tests that Eddie needs to undergo before the bone marrow transplant happens, but the process has been set in motion. I will be sure to update the blog on how things progress.

I will end with this. I know firsthand how hard it is to see someone you love endure such hardship. To anyone who is feeling this way, I just want say that as long as we support each other, we can muster up the strength to put up the good fight. Or, as they like to say in Korea, hwaiting

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