My Diagnosis Story

*Surprisingly, my diagnosis story happens in under
48 hours of randomly getting my initial bloodwork done for work.
I have met MANY people who had weeks and sometimes MONTHS before they knew what was wrong.
I was pretty damn lucky.*

*If you know notice something that if off with your body,
please go get it checked out!!!
Trust your gut.
You’d rather catch something
early than too late.*

So now that you know a little bit about my life before I was diagnosed, I can tell you about how the hell my life got turned upside down with very little to no warning.

Two weekends before Thanksgiving, I worked that Saturday and went to a friend from work’s house for a Friendsgiving party. I worked until 5pm and missed the actual meal part of the party. I parked my car and carried my purse and and some gifts up the hill as I was speed walking; and when I got to the door, I was practically out of breath. I’m not necessarily an athlete, but that felt strange.

I brushed it off thinking it was because
I was tired from work and
that I was in a rush.

I stayed for a while, danced to some throwback songs, and went home around 10. Woke up the next day feeling tired, which was totally normal after working a Saturday and going out right afterward!

That day I went winery hopping with two other friends from work, and I was definitely feeling run down. I still had a good time catching up, but I was not excited about going to work the next day. I also noticed that my gums on the top of my mouth were swollen, but I had no idea why that would happen.

I went to work on Monday and I remember texting my two camp girl friends that I couldn’t focus at work, and I had no idea why. I couldn’t look at my computer monitors. I didn’t want to talk to customers on the phone. I couldn’t do anything. I noticed that my gums were even more swollen, and I thought that was causing me my horrible headache. I texted my friend who works for a dental office and sent her a picture of my mouth. She said I should come in to see what was wrong.

My manager was out of the office that morning, so I had to reach out to her to tell her that I had to schedule an emergency dental appointment. Of course, I had a customer call me as I was leaving and he was telling me that he was stopping by and wanted to meet with me. It was really fun having to explain that I was leaving for an emergency dental appointment. Oh, and I also had a yearly scheduled dermatology appointment to get all of my freckles checked out later that afternoon.

Anyways, I left my office and went straight to the dentist office. They said that something was stuck in between my tooth and my gums. Two shots of novocaine later, they had to use a waterpik to get a piece of cilantro out. My molars were spaced out due to the inflammation, which was why something was able to get stuck in between my gum and my tooth. Little did we know, this was a sign of leukemia…

I didn’t go back to the office because I had my dermatologist appointment an hour and a half later. So I went to my parents house nearby and had lunch with my mom. I told her about my mouth, and how I had to leave soon to go to my dermatologist appointment, which happened to be with our good family friend. I told you I had a lot of friends! I had no bruises, which is important later…

I got back to my apartment and still wasn’t feeling well. I spent most of the night in bed, and I tried to “sweat it out” by wearing sweatpants and a sweatshirt to bed. Well damn,
I woke up drenched and
had to take a
shower before work.

Tuesdays were my “late day”, and I had scheduled to get my annual bloodwork done before going into the office. We can get a good amount of money deducted from our health insurance if we check off certain levels of “healthy”. I absolutely hated, and still do to this day, getting my blood drawn. Needles and blood?! No thank you!! But after many of the office moms and my manager, who I also call my “momager”(mom+manager), kept telling me to “just get the bloodwork done”. I figured why not since I wasn’t feeling well.

I was just thinking “please tell
me I have mono!!”.
Ha, that would’ve
been nice…

I got my bloodwork done and went to work. Because I did a half day on Monday, I figured that I would try not to have any appointments that day, except for my appointment at 5:30pm. I was in my dress pants and a long sleeve tshirt and I was sweating through my tshirt at work. Everyone else had sweaters and blankets at their desk, and I was sweating.

I remember walking to my manager’s office and telling her that I wasn’t feeling well, and that I needed someone else to take my late night appointment. She knows me well, and just goes “yea, you don’t look too good…” After being in the office for 3 hours, I had to go home. I stopped at a grocery store to get some chicken noodle soup and Advil Cold & Sinus, a medicine that had worked last year when I felt this way. I got home, put my sweats on, made some soup, and went to bed early. 

I woke up the next day(Wednesday) drenched in sweat again. Took a shower, got ready for work. I was getting a little nervous because if I had the flu, I didn’t think I should be in the office as I worked with a few moms with young kids, and I didn’t want to pass whatever I had onto them as it was the week before Thanksgiving. I’d rather be sick, than pass it along to a mom who is hosting Thanksgiving dinner. (Everyone should be taking note of that!!!! – it’s not about you!)

I got into my car, and within 5 minutes I got a call from a number that wasn’t saved in my phone. Typically, I didn’t answer those phone calls and just let them go to voicemail. Luckily I decided to answer the call at 7:45am on my way to work.

It was my primary doctor. She had bronchitis, so I could barely hear her.

She called me to tell me that she got my blood results back, and said that I needed to go to the E.R. immediately because my white blood cell
counts were off.

She said that I needed to get more tests done to see if something was wrong with the bloodwork, or to find out more info. She also told me to call her once I got to the ER so that she could talk to a nurse. SOMEHOW, I was calm and just said “ok, I’ll go to Bryn Mawr ER”. Next I called my manager, and I explained what my doctor said. I told her that I wasn’t sure if I would be in the office later today, but I would keep her updated. Little did I know, she had a feeling what was happening, but I’ll get into that later.

Next I checked to see what backroads I could take to go to the hospital as it was rush hour in the morning and I was about to get onto a backed up highway. After that I called my mom, explaining what my doctor said and that I was going to Bryn Mawr ER. She said she would meet me there, and if this doesn’t explain how mysteriously calm I was, I told her that “I’m just getting more blood tests done, I don’t think you need to come!” Luckily she still came.

She got there about 20 minutes after they admitted me to the ER and took a lot of blood. I can’t remember how many vials it was, but I remember thinking “HOLY SH*T”. After they took my blood, they hooked me up to hydration IV(saline).

This was my
first time in an
E.R. and my first IV…

I texted my roommate and my two camp girl friends that I was in the ER. I legit took a selfie with the IV in my hand and I was smiling totally normal!! Not sure what super power was in me, but now that I’m typing this, I’m wondering what the hell was making me be so positive!?

My mom shows up to my room, and I’m just hanging out watching Bravo(big surprise).

Within 2 hours,
an oncologist
came to my room.

He explained to me that they think I might have leukemia, but that they cannot confirm that until I have a bone marrow biopsy. They could do one there, but then they would have to do another one once I got transferred down to Hospital of U Penn.

At that point, I had no idea what a bone marrow biopsy was, but I said, “if it’s painful, let’s
wait until I get
down there(to Penn)…” ha.

He started talking about leukemia again, and I stopped him to say, “um, so I’ve heard of leukemia before, but what exactly is that?” Yup. I’m embarrassed, but hey, it wasn’t as in your face obvious as saying I had something like breast cancer. 

He went on to tell me that leukemia is a blood cancer, and that I wouldn’t be leaving the hospital for a few weeks.

If you read my first post, you’ll see what the hell was going through my mind when he said that. This was the week before Thanksgiving, a few weeks before my 28th birthday, and a few weeks before Christmas. What do you think was running through my head?? I was NOT happy about missing the holidays and my birthday to say the very least. 

The nurses told my mom and I that they were waiting for a bed/room at Penn, and that they might have me stay at Bryn Mawr for a night. I told my mom to call my dad and tell him what was going on. I told my mom to go home(20 minutes away), grab me some clothes(as I was in a gown and didn’t want to be wearing my office clothes), grab some dinner, grab my dad, and come back. Luckily right before she left at 4pm, The nurse said that they had a room at Penn, but it wouldn’t be ready for a few hours. I told my mom to go and that I would see her later. Again, I have no clue how I was so calm… 

Around 7pm, my parents came back to my room in the ER and I was ready to be transferred down to Penn. Of course I couldn’t be taken by my parents. I had to be taken in an extremely hot van, in a wheelchair, where I wasn’t strapped in, and oh yea, I was wearing a mask! 

We went on the strangest way on back roads through West Philadelphia to get to Hospital of University of Pennsylvania. I am amazed I didn’t fall out of my wheelchair from all of the potholes! My parents were driving behind us, and my mom met up with me at the ER before I went to my room. 

When I got there, I got 23 vials of blood drawn… yup, read that number again! That night at 2:30am, I got my PICC(Peripherally Inserted Central Catheter) line put in my right arm. No idea why it had to be the middle of the night after an exhausting day, but hey, that meant I didn’t have to be poked every 4 hours to get more blood drawn!

The next day(Thursday), I met my “attending doctor” aka the doctor who visits all patients in the hospital on a two week rotation. Luckily it was my future regular oncologist Dr. Perl, who specializes in AML- a type of leukemia. I’ve had attending doctors who specialize in lymphoma, breast cancer, so yes, I was extremely fortunate that he was the first doctor I had.

He went over my diagnosis, explained that we had to do a bone marrow biopsy(my first of many to come!) that day, and that we would be starting chemo ASAP once we found out what type of leukemia I had.

I was diagnosed with Acute Myeloid Leukemia, the most common type, with an Inversion 16 subtype, and a KITT mutation.

He told me that Inversion 16 is when the 16th chromosome pairs up with another one, and has a little party to make a bunch of immature white blood cells called blasts. The Inversion 16 type responds well to chemo, but it has a higher chance of relapse within the first two years. Yes, I knew I had a higher chance or relapse on day 2. 

A normal person’s white blood cell count ranges from 4,000-11,000, and I was at 61,000 on Tuesday for my initial blood test, and on Wednesday at Bryn Mawr ER(one day later) I was at 75,000. Leukemia doesn’t have stages like breast cancer does, but some people come into the hospital with over 200,000 white blood cells. So technically speaking, we caught it early. 

Stay tuned for my next post about my first month in the hospital!