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Introducing My Crazy Life

Before I can really start getting into the nitty-gritty cancer details, it would probably be best if I explained where I was in my life before everything seemed to be turned upside-down by a simple diagnosis.

After graduating from Florida State University with a degree in Finance (go noles!), I started a full-time position in Atlanta as a Property Tax Analyst. It was a great starter job, but I didn’t see myself sticking with it for very long. I had reached about 8 months into my position when I saw that the path I chose wasn’t taking me where I was hoping. There was limited growth opportunities and it seemed like I came into work everyday miserable, with the same miserable people and the same miserable assignments.

I took it upon myself to start job hunting again–I got quite a few interviews, but this started to look suspicious. I was calling out of work too much, my managers saw that I was losing focus, so I decided to call it quits before anything negative could transpire.

During my off period, I spent my time pinpointing where I wanted to go next in my career as well as in my personal life. I was fantasizing about the perfect wedding to my wonderful fiancé, Michael, and possibly moving to a new city. All the exciting things a 20-something year old should be thinking about.

All this talk of a new life gave me the idea of taking a bit more time off to do some traveling while I got my head on straight. I figured, when in my life will I have the opportunity to do something like this again? So my journey began.

 

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My European Vacation (?)

After quitting my job, I searched around for a little but the one little detail in the back of my mind was going with my dad’s family to Ireland and England in June for two weeks. Our departure date was quickly approaching, and I figured it would be pretty difficult to find an employer and be like, “Hey, by the way, I need like half a month off.”

So instead of having to go through that whole ordeal, Michael gave me the idea of just staying in Europe after my family leaves to travel on my own. I had some savings, so after getting the approval of changing my flight I immediately went to REI and bought a pair of hiking boots and backpack that went way over my head when filled. I poured over my laptop for hours deciding where I wanted to go, what I wanted to see, how to get there, and whether trains or taking a cheaper, kind of sketchy, Ryanair flight was worth the risk.

I looked for hostels that were in the heart of each city and poured over maps of main squares, museums and attractions. Planning this adventure had me sleepless at night in the best way possible. It gave me a new sense of joy in my life that my previous job had seemed to rip out of me.

When our departure date arrived, it was cold, raining, really just a crummy day, but the important thing was that I was finally getting out of here and (most) of our giant family, separated by our own hectic schedules, was coming along.

Our trips to England and Ireland were such great experiences. Ireland is by far the most gorgeous country I have ever seen, and spending time with my family was something long overdue. The two weeks went by so quickly.

The night before I was scheduled to venture on my own, I took a glance at my itinerary. It was wrinkled, stained and falling apart from my countless hours of flipping through it. My destinations were:

  1. Berlin
  2. Amsterdam
  3. Brussels
  4. Cologne
  5. Prague
  6. Vienna
  7. Budapest

My experiences in Berlin were simply magical–for lack of a better word. It was like a big kid Disney World. Every street you walked down would somehow spit you out at a new square with beautiful sightings, shops, and the food was to die for. The structures were beautiful, especially the Berlin Catholic Cathedral. I swear I was going to pass out walking up all those stairs, but it was totally worth it when you got to the top and saw all of Berlin spread out in front of you.

I was so disappointed to say goodbye, but excited for my next journey into Amsterdam. Amsterdam is the kind of city I heard mixed reviews about–its a place you have to visit at least once in your lifetime, then get out. Lucky me, I got a more real version of Amsterdam than expected. I happened to pick a hostel that was on the main red-light district and since marijuana is legal, and from what I saw–probably some harder stuff is easily accessible, you’d see people walk past you with zombie-like expressions on their faces, or see the more strung-out people riding bikes down the streets shouting obscenities and just complete jibberish. It was quite the experience.

I was able to explore Amsterdam for exactly one day–my birthday. As I did in Berlin, I walked up and down the streets taking it all in. There was a huge line at a foodtruck that I stopped at and got a smoked salmon sub. I walked some main streets doing a little shopping here and there. I also stopped into a smoke shop and looked at all the intricate glass work and crazy things I’ve never seen before, like Space Muffins, cannabis lollipops, basically if you were craving any food and wanting to get high–there was a way.

After traveling, I was really exhausted. I met some people in my hostel that wanted to take me out for a beer for my birthday, but I ended up falling asleep around 8 pm. The last thing I really remember before the nightmare that would begin is someone sneaking over to my bed to shine a flashlight in my face and someone whisper “Yeah, she’s knocked out cold. Let’s head out.”

And that’s when it hit me. I thought throughout the night I was just having some stomach cramps, maybe the smoked salmon I ate wasn’t the best idea, but this was way more serious and I was in complete denial. I was lucky–all 8 of my roommates seemed to have gone out for the night, so I rushed to the bathroom and didn’t stop heaving until every bit of substance was out of my body. My first stop in the morning would be the doctor, but the night never seemed to end.

Getting out of bed was so incredibly painful the next morning, even my roommates could tell something was wrong. I don’t know how or why, but I swear it was divine intervention that I was able to find literally the smallest doctor’s office on a little street corner across a canal.

As soon as I walked in, they took me to the back and immediately diagnosed me with food poisoning. They gave me some medicine to settle my stomach and I was on my way. I kept thinking to myself, what a waste of time.

Bittersweet news though was that the next morning I would be on a bus to Brussels–maybe this sickness would pass? I hadn’t been able to keep any food down, only a few sips of water here and there. My worst fear was passing out or accidently puking on myself during the bumpy 4 hour ride, but I pressed my head into the seat in front of me, looking down at my knees, eventually drifting off to sleep.

When we arrived, I found the first taxi available and wanted to jump into bed ASAP. I felt depressed, I wanted so badly to have that same energy and excitment I had in the past cities, but all I could do was just wander from my bed, to the bathroom, actually wanting to get sick so that maybe I could have one moment of sweet relief from the pain that was growing in my stomach.

One thing that a lot of non-travelers aren’t aware of is the fact that hostels don’t have A/C. They are generally pretty basic with some cots, lockers and bathrooms. But some (as this one) have really cool amenities like social areas, bars inside the lobby and if you’re lucky, places to grab a quick snack or even a full on meal.

But despite all these things, I thought I was literally the most unlucky person in the world starting off my 23rd birthday in crippling pain, in a strange country and completely at a loss of what to do. My room literally felt like a greenhouse which made me feel a million times worse, I couldn’t tell if I was just overheated, had a fever or what the hell was going on. My poor roommates were from Korea and only knew a few words of English, I can’t imagine how confused they were when they walked in to find a strange girl soaking her sheets with sweat and groaning at every move she made.

Eventually I gathered up the courage to checkout and go somewhere more private to rest. I went online and booked two nights at a hotel further into the city (with A/C of course). I figured if by some chance of a miracle I felt like walking around, at least I would be able to do it much more easily.

When my Uber dropped me off, walking into that hotel was like a breath of fresh air. I walked into my room with a king-sized bed, fluffy white linens and had my first hot shower in over a week. I turned the temperature down as far as it could go and slept all day and night. By the morning, my stomach was still hurting, but not nearly as bad. I had a new found desire to see at least something in this beautiful city.

I took a taxi to a square called the Great Place. It had tons of chocolate shops, little jewelry stands and a vast amount of artwork. I decided to stock up on souveniors here for my family and friends because sadly, I was going home early the next day. After staying in touch with my parents, they desperately wanted me to come home and I can’t say I disagreed.

I still look back on this journey with fond memories, but wish to god I could have finished it. In a way, I feel like I failed. Who knows when I’ll have the time or money to travel Europe in the same way again. Sure, I know I’ll have vacation days lined up with a job to go somewhere for maybe a week or two, but not in the same way. I probably won’t be staying in hostels anymore trying to act out words or phrases with my bunkmates, trying to break our language barrier. I won’t be wandering the streets anymore of cities as a person in my early 20s. It will all be different. And this is what was on my mind during my 10 hour flight back to Atlanta.

 

 

Going to the Doctor

This is where things start to get kind of fuzzy to me. As soon as I got home, my mother insisted I see my doctor first thing in the morning, and I was all for it. I arrived early in the morning and explained to him all my symptoms. I hadn’t eaten in exactly 6 days, so I really have no idea how I was still standing. I told him about the sudden pain I experienced while lying in bed, but besides that I was feeling much better. A huge thing I noticed is that while I was in pain 24/7, I really only felt nauseous when I ate anything.

After some tests and poking around my stomach, I yelped in pain when he pressed down on the lower right side of my stomach. I could tell by his immediate reaction it wasn’t going to be good news.

“You need to go to the emergency room immediately,” I remember him saying. I have no idea why, but I started laughing. I thought he was kidding. If anyone knows me well, they know that I have spent more than my fair share in the hospital growing up. I had absolutely zero intentions of going back, but I guess I kind of had to since I couldn’t keep a single bit of food down.

I asked him, “Are you being serious?” with a half-smile on my face. He said yes, the problem was most likely my appendix, but the strange part of it is with all the pain, and amount of time I was experiencing it, it should have exploded by now.

So anyways, I go to the hospital and explain what happened and they get me back fairly quickly and hook me up with some painkillers I had been dreaming about for a week. I’m not entirely sure what happened, anyone else could probably explain it better than I can, but I remember the doctors saying I needed a procedure called an intussusception.

Basically that means something was blocking my small intestine which was the reason behind all the pain and inability to eat. They reeled me back to surgery, and upon returning I got the news: they had taken out a good chunk of my intestine and found the tumor the size of a small peach, and yes it was cancerous.

Non-Hodgkins Lymphoma

I think upon receiving the diagnosis, I was in complete shock. I never in a million years dreamed that I would be diagnosed with cancer. When the doctors came back with the news, I thought to myself–ok this is fine. They got the tumor out, so now I’ll probably get to go home in a few days after I heal up.

Obviously that wasn’t the case, my intestines and stomach were literally glued back together. I had to relearn how to use my stomach muscles again. Changing clothes was a nightmare and getting out of bed took at least 5 minutes. The full recovery time would be 6 weeks and I still have a nasty scar going down my stomach with puncture wounds on the sides. I figure I’ll have it forever.

Past the surgery, my mom explained to me how serious the cancer was and how I would actually have to go through a whole regimen of chemotherapy. It wouldn’t be an easy fix. I couldn’t believe it, I started asking if I would lose my hair, if it’ll hurt, everything. I feel lucky because my mom actually works at Northside in cancer research so she was able to explain everything better to me than the doctors that were so quickly in and out of my room.

I remember so clearly breaking down in tears at random moments of the day. Despite the news, I felt relieved that I have a cancer that while aggressive, is treatable. It gives me huge empathy for those with worse cancers, and currently 2 cycles into my chemotherapy, I know I’ll be ok. It just sucks right now having to go into the hospital so often and deal with all the side effects, but I keep telling myself it’s a small price to pay to stay healthy.

Telling myself that though only does so much, I am lucky if I get more than 2 days off from going into the hospital. There is always some test they need to run, labs, scans, etc. If not that, then its getting pre-chemo meds or some other procedure. It is a lot to handle, more that I honestly thought. I thought I’d go in every so often for treatment, leave, come back maybe a week later for a follow up, but it is so much more intense.

They put a double power-port in my chest to do blood work and administer the chemo. I was awake during the procedure and could clearly feel someone hitting down on a piece of plastic to get it under my skin. I’m pretty terrified when the day comes to get it taken out. It looks like two small lumps with a tube going towards my neck. I’ve gotten comments on it occasionally, and a few weird looks. One girl asked about it and I explained it’s because I have cancer, and her eyes got so wide and started apologizing immediately. But truth is, I don’t really care. I found it nice that she had the courage to ask instead of just looking like most people do.

Additionally, I’d say I get a lumbar puncture once a week. For those who don’t know what that is, basically, they put a long syringe in your spine to draw out spinal fluid then replace it with chemo-drugs because cancers apparently like to hang out in your spine. And let me tell you, I’m still not used to the pain.

I was hospitalized after my first one, which might be why I’m traumatized each time I hear about needing another. I got a massive migraine which sometimes happens with lumbar punctures, so they had to go back in with a new syringe and do what’s called a blood patch–they insert my own blood into my spine to “clot” the incision site to keep my spinal fluid from leaking.

At the same time as this, I was also going through IVF. There is always a chance with chemotherapy that you can go infertile, so my family and I jumped at the chance to harvest as many eggs as we could just for peace of mind if I ever decide to have kids. So during this time period, I am being shot up with hormones and my ovaries are so big my stomach looks insanely bloated. Meanwhile, I’m going through all these hoops with the hospital and still trying to come to the realization of what is going on. Needless to say, with all the hormones and emotions of having cancer, I wasn’t in a good mental state.

An amazing piece of news that we got after what seemed like a million scans and an extremely weird and uncomfortable biopsy of my tonsils, there wasn’t another trace of cancer in my body. We were unbelievably happy to hear this news, but our journey was just starting.

I ended up being hospitalized because of my blood pressure. I couldn’t stand without my vision going black. And a separate time, I was hospitalized because of an uncommon side effect of getting literally the worst feeling of restless leg syndrome you can imagine. My chemo was messing with the nerve endings in my legs and the most frustrating thing about it was that no matter what painkiller they tried, the pain just wouldn’t budge. I came to the hospital in tears, being wheeled into the clinic because I couldn’t walk. It took what seemed like forever for them to finally find a drug that worked.

As it turns out, going through chemotherapy was more work than I thought it would be.

 

 

Social Media, Family and Friends

As many of you can see from the dates of these posts, I’m pretty far behind in writing this blog. The truth is, its hard to summon the energy to do anything these days. I spend most of my time in bed, watching Netflix or trying to get through a book. Half the time I’m too tired to finish reading a sentence.

On a positive note, upon my diagnosis, I felt completely overwhelmed by love and support. People I hadn’t even met were sending me get-well cards and gifts to keep me occupied in the hospital. I felt, and still feel so loved and hope everyone knows how much their acts of kindness and words of encouragement mean to me.

Fast forwarding two months into my treatment though, sometimes it’s hard to tell in the mornings if I’m fatigued or depressed. I’ve had some friends stop reaching out and have been feeling more and more lonely. The only reasons I can think this might be happening is because (1) it’s nearly impossible to see friends or anyone when you’re neutropenic and (2) I feel like a lot of people just don’t know how to react or know what to say. It’s like there is this barrier between you and other people. You start wondering if people forgot about you, if they really care and you start feeling shutoff from the outside world. Your whole world becomes the hospital and your bed, and that’s no way to live.

That’s why I have tried to keep an upbeat and positive presence on social media. I don’t want people to know that I’m scared of what lies ahead. I want people to know I’m still my old silly self and that I’m trying to be brave, and most days I am, but that doesn’t stop my random breakdowns that I have. It’s so heart wrenching to have a crying spell in front of your family, because they just end up crying with you and then you feel bad that you let your emotions show in the first place.

My family has been absolutely amazing though and unbelievably supportive. My mom and Michael and gone over and beyond anything I could ever ask for. These two people in my life are my everything right now, dropping everything and changing their lives just to make sure I stay happy and healthy.

 

My Chemotherapy

For those wanting a bit more information on my treatment, I’m on a chemo regimen called hyperCVAD+rituxan. I get these treatments every 21 days in A and B cycles. I had to stay in the hospital for the first A cycle, but from here on out I should be able to get it outpatient. Most likely they will have me carry around a medium-sized black bag with tubes that attach to a port in my chest. I’ve had to do this once before and let me tell you, it’s the most frustrating thing to get up from the couch and forget you’re attached to a pump and a bag of liquid.

My B cycles, however, are a little bit more intense and require me to be hospitalized for roughly 4 days. I generally don’t mind the hospital too much–but when nurses are constantly in and out of your room, taking blood, doing vitals, it can be hard to keep a friendly persona and I always go home and sleep for ages. I keep telling myself they are just doing their job to keep me safe and healthy, but it can become overwhelming.

One of my more recent emotional events was having to shave my head after my first round of chemo. I kept pulling out locks of my own hair, I would wakeup to my pillow looking like a husky rolled around on it all night. Probably the worst part was waking up in the middle of the night coughing from inhaling hair and having to change pillows, only to repeat this a few hours later.

We ended up shaving my head in the hospital shower. I laughed, I cried, but my mom and Michael tried to make it as positive of an experience as possible. I also felt a sense of relief that the chemo was working and that I wouldn’t have to deal with my long, overly-dyed hair anymore.

Below is a chunk of hair, of many, that I pulled out right before shaving, and as you probably saw, the top image is the after-math.

 

img_20170827_133820944.jpg

The next inevitable step of this includes my eyelashes and eyebrows. They are slowly fading away which honestly makes me more upset than my hair. I’ve never been a makeup guru and don’t plan on looking like a clown with overly-drawn eyebrows and fake lashes, so I’ve stopped wearing any makeup and will just deal with my missing features.

Oh well.

 

 

Memory Loss

One thing I’ve learned quite late in this process of chemotherapy is the side effect of memory loss. I’ve always had a bad memory since I can remember… pun intended. But never this bad.

People around me will probably try to discredit what I’m about to say, but you can’t truly know someone until you have been inside their head.

My memory loss started off kind of slow. Forgetting when I was last released from the hospital, what medications I’m on, etc. Then I started to forget names and faces. I forgot what procedures I was having done or when my appointments were. There are doctors and nurses I’ve seen over a dozen times and I still see them as strangers when they greet me, making me have to awkwardly cover my tracks and be like “oh yeah, hi!”.

This is starting to make me think why my blog is so jumbled. It’s because my mind can’t put all the pieces together. Some pieces are missing while others are distorted. When someone asks me a question to something I should know, I can see this pure, blank space and I’m desperately reaching into the darkness for an answer I know I won’t find.

The other day, Michael was talking about a house we had gone to see (we’ve been looking for a new home for our upcoming wedding) and for the life of me I couldn’t remember what house he was, or still is, talking about. We’ve gone to see maybe 4 or 5 houses, and after explaining in intense detail, and the fact we saw it only a few days ago… I feel like I’m losing my mind.

This side effect causes much more than just confusion, it causes frustration and anger that I can’t remember simple details about my day. Some days I feel like I have to barricade myself in my room before I become a fire-breathing dragon to my family. It’s been making it progressively difficult to read books, watch TV series and all the random stuff chemo patients are supposed to occupy their time with. Lately I’ve had to take the movie route because of my shorter attention-span, but there is no way I could tell you the name of the last one I watched.

Some days I feel like I’m coming down with dementia or some other memory ailment, but then I think about my grandmother who has started talking nonsense as she has aged. It has gotten progressively worse to where she has “black out” moments and has no idea what happened during those time periods. But I’m not old, this isn’t supposed to happen to someone that’s 23.

This makes me even more wary of my upcoming chemo cycle. How much of my memory can I possibly lose? Am I just being stupid?

I’m probably over exaggerating, but crazier things have happened.