I’ve been using this blog to help me remember recipes I like, but I need an outlet and maybe my story might just help one person.
April 1st 2015, I was diagnosed with Acute Myeloid Leukemia but that’s not quite where my story begins.
Months before I was every diagnosed, I was feeling tired. I thought I was depressed, Paul and I were having issues, I was wondering if moving to Missouri was really a good decision. I decided to go to the doctor who put me on some antidepressants. Paul faithfully took me to doctors appointments so that I could finally start to feel better. Unfortunately, nothing got better. Everything only seemed to get worse.
Looking back now, I don’t know how I was able to function like I was with the severe fatigue I was having. Everyday that I got up and got dressed was literally an accomplishment for me. That’s how tired I truly was. Nothing mattered to me, work, school, nothing. I would do the bare minimum at work, just to get by. School didn’t matter anymore. I would come home from work, sit on the couch or nap on the bed. I would wait for Paul to get home and I might get up and moving a bit, but mostly I’d just go to bed.
During this time, I started bruising and not lightly bruising either. Every little thing I bumped into, no matter how hard, left a mark on me. I figured it was nothing. I was just anemic, it’s happened before. No big deal.
A week before I was official diagnosed, I had a terrible tooth infection, I was no stranger to this. I called the dentist and asked for the pain killers and antibiotics and scheduled my appointment to get my tooth pulled in about a week. Tuesday night, I woke up with a decently high fever. This was a big concerning because they say your back teeth can affect your brain! So I woke Paul up and asked him to take me to the ER. They just simply looked in my mouth and told me to double the antibiotics but for some reason, none of this was working for me. The infection just kept getting worse and the pain pills provided little comfort. I did go to work that day. I was the only one working on the platform side which meant I was working from open to close, fever and all. On Thursday, I noticed every little thing was making me short of breath and I decided it was time for me to call my General Doctor to get to the bottom of what was making me so very sick.
I went into his office that afternoon, he gave me more pain pills and more antibiotics but he too noticed the bruising, from a mark on my chest where I had simply just scratched. He told me that I needed to get blood work done, and that it was important and could not be put off. He said TODAY I must go get it done. Again, I thought no big deal, it’s probably nothing. I’m a decently healthy 24-year-old. It’s nothing serious. He scheduled me an appointment to follow-up on Monday and go over my bloodwork and told me not to go back to work till Monday which I happily obliged because I really was not feeling well.
Monday comes along. Results day! The first thing he says to me “your blood work was abnormal.” Of course its abnormal! I’m anemic. Then the next thing out of his mouth….”You have leukemia but we don’t know what kind yet. I’ve scheduled you an oncologist appointment for Wednesday.” I can’t really tell you what he said after that. My mind was going in a million directions. I was 24. I had cancer. I had cancer….cancer.
The next few days were difficult. People were telling me maybe there was a mistake in the labs, it might just be nothing. A normal persons white blood cells are usually at 3k on the high-end. The first blood work they did on me, I was at 30k. Hard to say that kind of number was truly a mistake.
Paul took the afternoon off and that Wednesday, we went to the Freeman Cancer Institute. I met with my “new” cancer doctor. They did blood work again, and I met with the doctor who even further confirmed my leukemia. He told me I had Acute Leukemia. It was moving rapidly and I needed to be admitted immediately for treatment. They were able to get me a room at Saint Louis University Hospital on their leukemia floor. It’s a special ventilated area to help patients like me not get sick because at this point my immune system didn’t exist. I found out from the doctors that I had a white blood cell go wrong, and my body knew it was wrong, so it kept making more white blood cells to fight it, but unfortunately it just kept replicating that rogue white blood cell. That afternoon when I had 70k white blood cells, within just a few hours of me being admitted in Saint Louis, I was over 90k blood cells. This was April 1st. My official diagnosis day, the day that changed my life forever.
When we were getting ready to go to the hospital, we really didn’t know what to expect. Neither Paul nor I ever experienced anyone with cancer, let alone leukemia. We thought we might be there for a few days, tops. Boy, were we wrong.
The next day they installed my port. It was painful, I won’t lie. I cried the entire time, nothing seemed to calm me down until I finally saw Paul’s face again. He provided me with so much comfort during those terrifying days. I can’t imagine what it would have been like without him by my side for that first week. They were running constant tests on me. I had to go through something called apheresis (I’m not sure of the spelling). I had too many white blood cells to start Chemo, or I would be extremely sick. So this process filtered out a lot of my white blood cells.
The next day chemotherapy finally started. I did 7 days of multiple different kinds of chemo. This was called induction chemotherapy. It would put me into remission and get me through the next step. They warned me of all the effects of chemo, but on tv and movies, people were always sick during the chemo. I thought I went through everything so easily, little did I know, I would get extremely sick a week or two after I had finished.
I had my first bone marrow biopsy then. It was extremely painful, but they tried to help with the pain and anxiety it caused me. I was lucky enough to have Paul stay in the room with me, even if he had nothing to say, just knowing he was with me gave me comfort.
A few weeks later they finally got the results of that biopsy. I had Acute Myeloid Leukemia, and don’t ask me what that means. I’m sure there’s smarter people in the world who can explain it much better than myself. Sometimes Cancer is confusing and it doesn’t make much sense. AML is a cancer that mostly shows up in children. They don’t know too much about it in adults because it rarely happens. Such is my plight in life it seems. They did a chromosome test and it showed that I had a translocation of chromosomes 9 and 11, aka 9 and 11 just decided to switch places. This type of cancer isn’t one that runs in family and my family doesn’t have any history of cancer anyway. This is something that I had acquired somewhere along the lines. I’ve learned that your body creates rogue cells every five minutes or so, but the average persons immune system has the ability to recognize this and squash it. Mine had lost that ability.
When you have a translocation of 9 and 11, they said your prognosis is considered “moderate.” You’re not on your death-bed, but it ain’t gonna be easy and that really is the truth. This journey has not been easy but without Paul, my family and my amazing friends. I don’t think I’d ever would have been able to do this alone.
I spent 24 days in Saint Louis. Paul eventually went home when my parents arrived to give him some reprieve. My dad stayed with me for the first week or two (These days seem to be somewhat of a blur so I can’t quite remember anymore.) My mom stayed with me for the entire rest of my time there and even had the opportunity to drive me home.
Paul drove to visit me every weekend. It was an 8 hour or more round trip drive, but that never stopped him. His dedication to me is unwavering, then and even more now. His trips made my days there a little brighter and every week I looked forward to his visits as if a celebrity or rock star were coming to visit me. Paul is my rock star. I know a lot of people say that about their significant others but Paul has gone above and beyond for me in more ways that you can ever imagine. He’s been by my side without any bit of doubt and I can’t ask for anything more from him than what he’s already given me.
All the chemo eventually killed every little bit of my immune system. Literally, there was nothing left. I was so tired and weak. Food tasted disgusting, nothing was appealing to me anymore. Believe it or not. I was too tired to even crochet.
I had a visit from my best friend, it was a wonderful surprise but unfortunately she was there for the day it was time to shave my head. I knew I was going to lose my hair. They warn you of that, but no one told that it doesn’t fall out slowly. One day, I just woke up and clumps of my hair was coming out. It was time. Chastity couldn’t be with me as much as she could, but she decided to shave her head with me and that meant more than she’ll ever know. We’ve had so many happy times, but it’s nice to know that even during the sad times. She’s there to share it with me.
My 24 days there seemed to be quick and an eternity at the same time. My second mother Beth came to visit me a few days before I finally got to leave. Her and my mother must have been my good luck charms because I was able to go home about two weeks earlier than they had expected. I got to spend a few more days with them and I finally got to be home with my Paulie. I got tired out easily, but I enjoyed my time home very much. Two weeks was too short but after a month in the hospital it felt like heaven to me.
I originally was going to write everything out but I think my story is much too long. I decided to break this into multiple parts because I just have too much to share.
Thank you to everyone who reads this, and my friends and family who have given me strength thus far to continue on this wild ride I’ve been on thus far.
Stay tuned… Next up, The University of Kansas City Medical Center.