“You’re Not Going to Leave the Hospital For a Few Weeks…” Part 1 (Medical)

Remember when an oncologist in the ER told me that right after he told me I most likely had leukemia? Yupp. 

I got admitted to the ER on Wednesday November 14th, 2018 and I was discharged on Monday December 10th, 2018 – just 5 days before my 28th birthday. Let’s take a deeper dive into those 26 days in the hospital…

In this post, I’m going to talk about my hospital stay from the medical standpoint. I will be doing a separate post on all of the other stuff.

After I was transported from the E.R. at Bryn Mawr hospital, I was shuttled down to West Philadelphia to the Hospital of University of Pennsylvania. 

I had waited all day for a bed/room to open up. I was beyond exhausted.

I was admitted onto a floor that wasn’t an oncology floor, and with a roommate.

When your world gets turned upside down, the last thing you want is a roommate.

Luckily, I was able to move to the correct floor without a roommate the next day. I was so happy to be in a hospital room instead of the E.R. that I didn’t even care that I was temporarily in a room with a roommate. 

While I was in my shared room, on top of being woken up every 4 hours to get my vitals(temperature, blood pressure, oxygen level) checked, I got woken up at 2:30 in the morning by two women who were going to put my PICC(peripherally inserted central catheter) line in my arm. I had no idea what in the world a PICC line was. 

I had no idea that something was going to be put into my arm, and I definitely had no damn clue that it would be in my arm for 6 months… 

They gave me a shot or two to numb my arm, and those shots hurt like a b*tch in itself! They measured out how long they thought that the tube would have to be to go to my heart. Yes, this thing that was being put in my arm, had a tube that would go into a vein, and go all the way to my heart. ABSOLUTELY MIND BLOWING!! 

Once I was numb, I honestly don’t remember feeling anything(good sign). They put on the dressing(bandage) and explained that it would have to be changed once a week by a nurse(the dressing not the PICC line!) I was told that I had gotten the PICC line so that I wouldn’t have to be poked a billion times to get my blood drawn and that it would be the way that I would receive my chemo drugs. 

I had a PICC line with 2 lumens so that one could be used to draw blood, and one would be used for chemo. Unfortunately, just because I had the PICC line in, didn’t mean that I was done being poked just yet. 

I still had to have a phlebotomist who was a woman about my age, who was incredibly nice. That was a treat considering I saw her several times over the first few days! I’m pretty sure she took 11 vials one of the first few times she came to see me… I think the average was about 5 vials per visit every few hours. Most tests need their own vials to be put into a different machine, hence the crazy number of vials!

One thing I was definitely not prepared for was getting a bone marrow biopsy done. 

I had my first of MANY to come, done on my second day in the hospital, Thursday November 15th. They had to do this to find out what type of leukemia that I had.

 I ended up being diagnosed with Acute Myeloid Leukemia, with an Inversion 16 subtype – with a KITT mutation. 

I can’t remember what I thought a bone marrow biopsy was, but I didn’t really want to ask too many questions. Just tell me what to do and when it’s over!! I will do another post on this later…

I had to do a few more medical tests before I could start chemo. I had to get a lot of tests done with the heart because chemo can affect your heart. I had to get an X-ray, EKG, ultrasound(of the heart), and an echo done. 

When they did my ultrasound, they discovered that I had ridges on the inside of the left side of my heart. I was almost 28 years old and had no idea! I think they said that about 15% of people that get the test done discover that they have it. I never had any heart symptoms from it. They said it wasn’t anything to worry about, but they just wanted to make a note of it. 

Because of that, I had to have a heart rate monitor with 8 stickies and wires on my chest for most of my 26 day stay.

Due to me having to wear the heart monitor for majority of my stay, I had to wear a gown as my shirt. I mean, yes, I could have gotten a pajama top that had a pocket and cut a hole in it for the wires.. but I didn’t feel like doing that!

As you can see in the picture with one of my brothers, the heart monitor and some of the wires were in the pocket of the gown. It wasn’t heavy, it was just annoying to have on me, and would pull my gown down.

As I’ve mentioned before, every 4 hours, I would have my vitals taken. This is standard for any hospital stay, but it’s something that no one mentions or talks about. 

I would get woken up between 4-5am. 

Vitals would be taken around 11pm-midnight, and sometimes I would stay up until then, just so I wouldn’t be woken up 1-2 hours later after going to sleep. I took an Ativan to sleep, but honestly I took it more to keep me asleep and to go back asleep after they woke me up twice, rather than taking it to fall asleep. 

I was hooked up to my first bag of chemo in the afternoon on Friday November 16th. I was supposed to be getting ready for a black tie fundraiser, but I guess getting hooked up to chemo was my new activity for the evening! 

I mentioned in my last post that my induction chemo was called “7 & 3” because it was 7 days long, and 3 different types of chemo. 

I was hooked up to chemo for literally 24/7. No breaks. Pretty sure I didn’t shower…

But that was also due to having the heart rate monitor 8 stickies and wires on my chest. I think we removed the monitor to shower once in those 7 days during chemo, and I had the monitor on until the day before I was discharged… so about 24 days with the heart monitor and 8 stickies and wires on me… fun stuff! 

We also discovered that my skin was very sensitive, so we had to use the stickies that were for sensitive skin and didn’t feel like they were going to rip my skin off. 

Now onto the fun long words of chemo. 

I had Cytarabine for 24/7, I had 3 smaller bags of Gemtuzumab Ozogamicin, and I had 3 quick doses of Daunorubicin from a syringe that connected directly to my PICC line lumen. 

The Daunorubicin is the chemo that made me lose my hair. 

Fun fact: not all chemos make you lose your hair! 

I will be doing a separate post on the experience of cutting my hair and then buzzing it. 

On Friday November 23rd, the day after Thanksgiving, I was unhooked from my chemo IV by one of my favorite nurses(see photo for my excitement)!! Once I was detached from my continuous IV, the rest of the hospital stay(17 days). 

The most important thing to note about chemo for leukemia vs. majority of other cancers, is that chemo destroys your immune system; it doesn’t just affect it, it annihilates it. 

The goal is to have ZERO WHITE BLOOD CELLS. 

That’s legitimately what the chemo is designed to do. Most of the time your platelets decrease, which makes you more likely to get random bruises. Platelets are the cells in your blood that help clot your blood. 

Your hemoglobin will also drop, which is the part of your red blood cells that take oxygen to your blood. Typical side effects of that are exhaustion and difficulty breathing. 

Chemo also kills off your ANC(absolute neutrofil count- the core of your immune system). The one thing I cared about the most was my ANC. I was allowed to go home when it hit 500.  A normal person’s ANC is about 1500-2000.

It would mean that I was still very susceptible to infections. 

On December 3rd, 2019, I was deemed cancer free!

During my hospital stay, my nurses put a chart up in my room to keep track of the day(+1 post chemo etc.), my WBC, hemoglobin, and ANC. 

There would be lots of cheering with whoever was in my room when my counts would rise! 

Remember, I was trying to get home before my 28th birthday(12/15) and Christmas. Here is an example of my chart! (See photo) 

The nurses also noted whenever I would get a platelet or blood transfusion. I received 14 bags of platelets(some days I had 2), and only 1 bag of blood. Whenever I got a bag of blood or platelets, I claimed that I felt better. Did they actually make me feel better or give me more energy? Bag of blood, yes; platelets, probably not. But hey, mentally I felt better when I got a bag of platelets! 

A BIG part of the journey is a mental game. Remember that…!

One last thing that occurred during my hospital stay was that they had to test me for the flu. I don’t remember having any symptoms. I was NOT looking forward to this test. It was a long Q-tip up my nose to my brain, just kidding, but it was REALLY LONG, and another Q-tip down my throat. 

I don’t have a good gag reflex, and they chose to do this about 45 minutes after dinner… so you can imagine what happened. 

Luckily it was a girl nurse my age, and after she did my nose, I said:

“I’d like a bucket just in case I threw up from the throat part.”

Well, good thing I know myself because damn right I threw up. But I didn’t just throw up, I mean the actual part of throwing up, yes, that was normal… keep in mind that I had low platelets, the stuff in your blood that makes your blood clot… 

So when I threw up, I managed to pop blood vessels in both of my pupils. From looking at me, you couldn’t tell. I just had black/brown dots in my vision, and made the area around the dots blurry. I could still see, but watching tv, reading a book, texting/looking at my phone were difficult, and I couldn’t do it for long. 

I got checked out by an eye doctor, and they said there was nothing concerning. I had dried blood in my pupils, and only time would make it go away. Cool. Awesome. Could be worse though!

So other than the spots and blurriness in my vision, I went home feeling pretty normal! I didn’t have any food restrictions. No crazy amount of meds. I had a follow up appointment with my new nurse practitioner the next week. 

I met my home visit nurse who taught me how to flush my PICC lines every day(ha oh yea). 

I got to be home for my birthday!! 

I had a low key dinner with a few friends at my parents house as I wasn’t allowed out in public yet. I was told that I wasn’t allowed to drink for a few months due to the chemo suppressing my immune system and going on and off chemo.

I decided to do a separate post about what I did during my 26 day hospital stay- what I did during the days, who visited, what I ate(food restrictions), and anything else that crossed my mind. Stay tuned for my first hospital day part 2!

How eventful was your first hospital stay??