How We Found Out My Leukemia Had Returned, and My Long Day in the E.R.

In my previous blog post, I talked about my last few days and weeks leading up to my relapse.

Downstairs to the ground floor I went to get an MRI of the middle of my back. My appointment time was at 4:30. Good thing I brought a book! I got to Penn just before 1pm.

This was the first time I had gotten an MRI. I changed into the double gowns – one open in the back, and one open in the front, so that you’re fully covered. Take all of your jewelry off, keep your shoes on until you go in for the scan. 

Let’s just say an MRI is NOT for people who are claustrophobic!! Luckily I am not. The two tech people put a warm blanket over me, put ear plugs in my ears, and then put big headphones over the ear plugs. An MRI machine is very loud.

Almost an hour later, and some mini naps, I was done! As the tech guy was walking me back to the lockers/changing room, I asked him if he reads the scans, or just does them. He said that he only gets the images, and then they send them to the doctors. So I got no info if they saw anything.

I left Perleman Center/Penn around 5:30pm and I saw that I had a voicemail from a number that I didn’t recognize. I listened to it, and it was my nurse practitioner checking in and seeing how I was doing. Nothing seemed urgent or that I would need to call her back since it was after office hours.

I drove home, had a nice dinner, I wish I had had some wine(!!), and went to sleep. I took some stool softeners as in my last post, I was constipated and bloated.

The next morning, Friday, I woke up to a voicemail from another number I didn’t recognize. This voicemail was from my oncologist Dr. Perl… from 10:50pm at night. 

I have my calls silenced from 9:45pm-6:45am while in sleep mode – with the exception of “favorites” – like my parents etc.

The voicemail went something like this… 

“Hi Christie, this is Dr. Perl… I wanted to go over the MRI results with you. I am looking in my computer to see if you’re in the ER but I don’t see you checked in. Don’t know if that’s an error or physically you didn’t go down…. Very important that you come in tonight… if you aren’t there, please go once you get this voicemail… I’ll check in with you in the morning.”

Well, wasn’t THAT a voicemail to wake up to! 

Next move was to tell my parents who were already planning on going to Penn’s hospital at some point that morning and afternoon to visit him… but now my mom was going to be taking me to the ER! (We joke that we should be getting a family discount!)

After I tell my parents what Dr. Perl’s voicemail said, which didn’t actually say what the MRI said or what was going on, I waited until 8am and called my nurse practitioner back. I told her that I got a voicemail from Dr. Perl, and that he told me to go to Penn’s ER, but that it didn’t actually say what the MRI said. She goes “OMG, Christie, I can’t believe I have to be the one to tell you this… but they found a tumor in your spinal cord…” (She is truly the best by the way!)

So after a few seconds of WTF going on in my brain, I tell her that I guess I need to pack a few outfits and some books and my phone charger… This clearly is not the first time I’ve been told to go the ER to get admitted to the hospital!

I tell her that my mom will take me and we’ll be there before 10am. I pack up my belongings(forgot toiletries…) and down to Penn we go! 

Thankfully, the new hospital had been open for a few months, and this ER was light years better than the other one. I also think timing was on our side. We got a room almost immediately once I was done triage(vitals and basic questions). 

Within the hour… yes, within an HOUR of being in the ER, I had already met with neurology, radiation oncology, and a few other members of my team. Penn is truly AMAZING and on top of their sh*t. Dr. Perl was away on a conference(hence the late voicemail), so I met with the hematology oncologist that was covering for him. 

My head was spinning with how many different doctors and nurses I saw that morning. 

Next up was a CT scan to place my “tattoos” for radiation. No, not those big black marks that were on stickers!! Little pink dots – 3 in a line in down the middle of my chest, and 2 on the left and right side of my ribs. Later, I ended up getting 3 more around my waist line. These were to line me up with the radiation machines. 

After that, I went to get an hour and 15 minute  MRI to look at my head, neck, and lower back. I think I had the same two techs that I had the day before. Again, warm blanket, ear buds, headphones. Definitely took a nap because I was exhausted. 

Around dinnertime, I was moved to a room in the hospital, one floor and two rooms away from my brother Pat. They couldn’t move me to his floor as that was used for bone marrow and stem cell transplants. 

I was told I shouldn’t eat before my next CT scan, so I didn’t eat until 7:30pm(I didn’t have lunch because of the other scans!) just when I thought I had time to relax before my next CT scan, three people came into my room. The lumbar puncture team. 

The only time I’d had a lumbar puncture before was when I was originally diagnosed in November 2018. I had a headache for two days.

That time, I laid down on my side on my bed. They also only TOOK fluid and didn’t put any back in.

The two people on the puncture team said that we could do it with me sitting on the edge of my bed, and I would lay on my pillow on the table. They would also be giving me chemo. The whole process of numbing, extracting, and chemo would take anywhere from 30-60 minutes. By the way, thats about 30-60 minutes with a needle sticking out of your lower back….!!!

Luckily it went extremely smoothly and I practically took a nap! The third person on the team was someone who work’s with Dr. Perl and she administered the chemo. Not all nurses or teams can do that.

They took 17ml of spinal fluid!! It’s as clear as water, and gets replenished constantly throughout  the day. Let’s just say I learned a LOT this first day!!

After a lumbar puncture, you are supposed to lay down for an hour to help reduce the chances of a raging headache. They also say that caffeine can help too. I had my dad grab me a coffee around dinner time. I knew I was going to be woken up several times throughout the night, so who cares if I can’t really sleep?? I’d rather not have those awful headaches. I magically drains it while semi laying down. 

Once I was allowed to sit up at 8pm… I finally had some dinner!! 

It wasn’t long before I was getting taken away for another CT.  At 9:30pm they took me away to get a CT scan of my ribs, waist, and pelvic area. 

I got woken up at 11pm to get a Lovenox shot –  a blood thinner shot so that I don’t get blood clots. I also got a medicine for my stomach(bloating I think). I asked for Ativan to help me stay asleep. I have no problem FALLING asleep in the hospital, but It had been such a long day that I just wanted a decent night’s sleep. 

Because they put me on steroids, they were pricking my finger before every meal and before bed to test my blood sugar. If I was over 151, I needed a shot of Insulin. 

Finally, I got to go to sleep… until 4am when they wake you up for vitals!

I don’t know about you, but I am exhausted just from writing that!! Stay tuned for the breakdown of my week in the hospital!