Dropping Feels Like Drake

Thursday, February 12th was a very special day, not for me, but for the rap and hip hop community. Why you ask? Well, it's because Drake aka Wheelchair Jimmy dropped a mix tape of feels like you cannot believe. And today ladies and gentleman, I drop my own, not of the musical variety of course, but feel free to play If You're Reading This It's Too Late (available on iTunes now) while you’re reading this (or what I'm listening to at the moment which is The Civil Wars). If John Paul or Joy somehow stumble upon this blog, all I ask is for a small private concert; that is my Make-A-Wish.

 

Ok, now down to the nitty gritty. I'm obviously procrastinating with witty social commentary because this will probably be the hardest thing I have written and re-experiencing everything I’m about to tell you is something I don't want to do. However, I feel like I need to be completely transparent about what has been going on in my life the last month. If you want to stop reading now and just follow my very few Facebook updates I wouldn't blame you one bit, but if you continue, well sorry for the shitty mood I'm about to put you in. 

 

When I left off I was just getting through half of my second hospital stay. I had my Day 15 bone marrow biopsy, and at that time things were right on course. The FLAG regimen was working just as it should, killing off the cancer and pretty much everything else, leaving me more tired than I'd ever felt in my life. As luck would have it, I was able to be released from the hospital after 21 days instead of the originally planned 30. This is more than likely to do with the fact that I'm young and the picture of health, expect for this whole leukemia thing. 

 

The next week, on January 20th, I had my latest but certainly not my last bone marrow biopsy. My wonderful nurse practitioner Kelsey administered it and it went as easily as it could. Then the waiting game started all over again. I'm really good at this game actually; I love it because I can make up my own outcome. I can pretend that since I'm feeling good the results must be good as well. Denial and I are really good friends as it turns out. We really get each other. 

Sure enough, the results come and as usual, the chemotherapy treatment worked, but not as well as it should have. Surprise, surprise: my leukemia is just as stubborn as I am. Thankfully my dad and doctor came to an agreement that instead of going right back in for more treatment, I'm healthy enough to take a little bit of a break. For a short while my life could get back to normal, or at least whatever my new normal is. I still would have weekly visits to the outpatient clinic for blood draws and all that fun stuff, and I even got to go back to Iowa for a few days. That was a party: just me, my dad and my cat. I even got to catch up with old friends, which I'm very grateful for.

But time moves too fast, and soon enough it’s back to Cincinnati I go, and eventually back to the hospital. I get my central line put in so now I can receive blood products, fluids, and chemotherapy, and get blood drawn all at the same time! How exciting is that? It'll come in more handy whenever I end up getting my bone marrow transplant. When we last saw my doctor I was supposed to be getting a high dose of a chemo that would completely knock me on my ass again, but during my respite they decided to use a drug that had just been approved by the FDA. Thanks to a well-connected friend, Alec, I had some prior knowledge about this drug and was even able to one up the doctor with my knowledge. (What whattttt!)

Since this is such a new drug, and I'm the first person at this hospital (and only the third in the state of Ohio) to receive it, everyone had to learn how to distribute the drug and all that jazz. I don't think I have ever had this many people checking up on me during this last hospitalization. The good thing about this hospital stay was that it was only a few days long, and then I got a small pump to continuously give me chemo for 28 days. But to date this stay was also the lowest, darkest, place I've ever gotten to. 

As soon as I was admitted, the nurses, doctors, and PCA's could sense the shift in me. The bubbly, smart-ass, personable Ashley was gone and this new person was in her place. No matter what anyone said or did, I just could not stop crying. I'm not talking soft pretty tears; I'm talking full body sobs. I was done. I wanted out. I was so close to going against medical advice and walking out the door and going home and back to my old life.

I kept remembering the last day that I was truly happy and started wondering if I would ever be able to feel that way again, to be that person again. That day could not have been more perfect to me. It was one of the last warm fall days of the year and I was able to be home in Cincinnati for the weekend. My friend and I went up to a small cafe in Northside to get lunch to go, had a little picnic, and then spent hours wandering around Spring Grove Cemetery and Arboretum. There's a lot more to that day, but what stands out the most to me is the feeling that I finally found my home. I remember getting back to my apartment late in the afternoon and before drifting off to sleep just feeling so content. I had (and still do have) a great group of friends and was in love with the city and what it had to offer me. 

But now things have changed. Every new ache and pain, every cough or sniffle sends a panic through me. Are my counts too low? Did my cancer come all the way back? Is this all worth it? It's almost like everywhere I turn there is something or someone who could get me sick. My body shouldn't be betraying me like this.

I’ve been told over and over again that “this treatment will work” and that “we'll get good results with this combination,” only to be told that “we're going to have to try something different,” that my life is going to be put on hold again for another hospital stay. I had a tough conversation with Kelsey about what would happen if I just stopped treatment and lived in denial about my disease. The answer was gut wrenching. If I walked out the door I wouldn't have much time,but I would be in control of the time I did have. I wouldn't have all the appointments; I wouldn't have the biopsies, but I would have only one outcome. It's an outcome I can't even type out but you get the picture. If I didn't have the support system I have, I would have quit and walked away from it all over the last weekend. I was so so close; I can't stress that enough. But I can't let everyone's support be in vain. I can't let you all down. I have to pick myself up out of this hole and keep going as hard as it is to do so.

I look at all the medication I have to take, the steroids that puff me up, the poison that is going inside of my body every single day and get so angry. This shouldn't be happening to me. Haven't I been through enough? I've overcome so much and dealt with so much adversity in my short life. Why can't I just be happy and normal? This isn't fair. I want to wake up from this horrible nightmare and just be the person I once was. I try so hard everyday to be that girl, but it seems like it gets a little harder to be her and not get consumed by this anger and sadness that is inside of me. 

 

I want to get back to being the girl I was before. I have so much still ahead of me and I refuse to let this disease be the byline of my life, to let it define me. Things could be a hell of a lot worse, and I've got a lot of good things in my favor. I'm not always going to be the girl with leukemia. I'm going to be the girl that ::insert descriptor here:::.  I want to fall in love, real love like what my parents had, and not this bullshit I've experienced so far. I want to make a difference and push myself to my absolute limits. I want to travel the world or just get in a car and drive until I can't see straight. I just want to be free. 

One day I'll get there. It's not going to be anytime soon but it's coming. If I close my eyes I can faintly see it. I can see myself surrounded by all those who have been there for my family and me during this time, happy and healthy. And I don't know about you but I can't wait for that day to come. 

 

Setbacks

Here we are again, back at University of Cincinnati Medical Center. How did we get back here you ask? Well, it's a funny story... In my last entry I was heading in to get my first outpatient/post-induction bone marrow biopsy.  On Friday, December 19th we received the preliminary results and this starts my first setback. I mentioned in my previous entry that my doctor wanted to see 90% of the cancer blasts killed. I was wrong, he actually wanted to see 95% of the blasts killed but according to my preliminary results only 80% of the blasts were gone. What does this mean? Well, it means that my first round of chemo did kill a lot of the cancer but it was still unsuccessful. 

So what now? One of two things could happen. The first is we get the final results back and my doctor is comfortable with the percentage of the cancer blasts still present and I start outpatient treatment after the holidays. The second is we get the results back and they confirm that 20% of my bone marrow is cancer blasts and I will need to be hospitalized again for a more aggressive treatment. 

Leaving with that information and knowing that the final results wouldn't be available until Monday we make the most out of the weekend. I was so grateful for that weekend of normalcy. I honestly can't believe I did so much from going to the movies and dinner with my dad to doing a 3 mile hike on a rare sunny day. As the weekend came to a close the reality of being re-hospitalized set in and I wasn't scared or angry about it. 

Monday rolls around and we come to my appointment with my bags packed, fully prepared for a what could happen. The doctor confirms with us that 20-30% of my marrow is still cancerous. I'm given the option of holding off starting treatment until after Christmas but decide against it. Christmas comes every year and the sooner I start treatment the sooner I can get my life back. We are immediately given a room, consent forms for treatment were signed, and the chemotherapy starts. 

This time I'm on what they call the FLAG regimen. I was given three different IV transfusions over the course of 5 days. This regimen is much more aggressive and much shorter than my original induction. My counts to have dropped even lower and completely wipe out my immune system causing me to spike a fever. Thanks to modern medicine we were able to get my fever under control within 24 hours. My doctors have told me that I am very lucky I didn't get a fever the last time around. Apparently this is something that is very common in cancer patients. 

Today is Day 14 and it's biopsy day - a lot hinges on the outcome of these tests. My doctor wants to see zero cancer blasts in order to call this round successful. If the results come back in our favor we will be one step closer to an outpatient treatment and remission. If they don't we will have to do another round of chemotherapy, maybe even get in a clinical trial program. I have a good feeling about this and I believe that we're on the right track. This reinduction was a setback but I never expected this to be a smooth ride. Cancer, and life in general, is completely out of my control and I'm going to roll with the punches as they come. 

Many people have asked if there is anything they can send me or if I need anything so instead of saying my usual "oh I don't know just whatever you can think of" I created an Amazon Wishlist. Please don't feel obligated to send anything but this just makes it easier for anyone who wishes to. 

Outside

I'm out of the hospital.

Great, right? I only had to stay 24 out of the required 30 days and when I went to my first outpatient blood draw on Monday my counts were continuing to improve. The best thing is I'm finally off steroids. Steroids suck. All I could think about was food. To some degree that's normal but when you're making lists of things you want to eat and before you fall asleep every night you're really excited about breakfast you know there is some kind of problem. For a while all I was eating was chicken nuggets, mash potatoes, and corn, which let me tell you is crazy delicious, but my sister definitely gave me crap for my childlike palate. 

I digress. 

I wish I was more prepared for the days in between when I was released from the hospital until my next treatment. I'm not going to sugarcoat this, these last few days have quite possibly been the most difficult since I've been diagnosed. Being able to be out of the hospital is such a blessing but it comes at a cost. While in the hospital there is constant action. Blood draws multiple times a day, vital check every four hours, nurses and other medical professionals coming in and out of your room and now there's nothing. 

This peace and quiet that is supposed to be relaxing and healing is actually nerve wrecking and has caused so much anxiety. Most of it has to do with the fact that we don't know where we're going from here. Today I have another bone marrow biopsy to help us figure it out. From here we will know which course of treatment will be best and how much of the cancer was initially killed. They want to see at least 90% of it gone to call my first treatment successful. Talk about pressure...

But I have to keep in the front of my mind all the positives and know that this always could be so much worse. 

  

Day 15 - Halfway There

How We Got Here

I've been meaning to write this down for the last couple of weeks, mainly so that when this is all behind me I can read this and see how ridiculous the whole situation was. A month ago I was fine. One month, 30 fucking days ago, I was a normal, happy, healthy 25-year-old. I was working, traveling between two cities I love, and spending time with some of the best people in the world. Perfectly happy, blissfully unaware of what was going on inside of me.

Around the second week of November I come down with what I think is a cold. Working as much as I do and traveling in between Cincinnati and Washington, DC for the last couple of months, getting sick wasn't unexpected. So, I do what any normal twenty-something does and medicate with heavy doses of over-the-counter medication. I knew I needed to get better fast as work was about to ramp up to a whole different level of busy, but something wasn't right. I couldn't quite put my finger on it, but eating, drinking, breathing, and even just laying in certain positions hurt. I finally made an appointment with a doctor but they couldn't get me in until Thursday. Ok, I thought; I can make it until then.

Just kidding. 

I barely slept that night. I would wake up, try to find a comfortable position and try to fall back asleep. Finally after struggling all night I gave in, took a shower, and got my ass to the ER. Luckily it was early enough in the morning that they rushed me right in. I was taken back into the ER and went over all my symptoms with a nurse and hordes of other medical professionals. Blood was taken, morphine was given, and I was sent to get an ultrasound of my abdomen.

First thing they notice is that my liver enzymes are abnormal. Well, if any of you know me, you should know that that's probably no surprise. Not to say I'm a lush or anything, but I do like to partake in a bottomless brunch from time to time. Whatever, no big deal. Next thing is my spleen is enlarged. I had had a feeling that was the majority of the problem thanks to Web MD. 

So now what? Well, the trauma surgeon and his team come in to talk with me. They reassure me that as of this moment I am nonsurgical and that my labs are still getting looked at. At this point he says this looks like mono, but the results came back inconsistent and they are retesting. “Mono,” I think, “that sucks, but I can deal with mono.” Work won't be happy and I'll probably be a zombie, but I can do it.

About 40 minutes later another doctor who I hadn’t seen before steps in and that's when everything changes. He speaks to me softly and tries his best to explain what is happening to me. I miss about 90% of what he says because the word LEUKEMIA is just bouncing around in my head. I make him tell me over and over again what the chances are that I have it, and all he will say is that the chances are high but that we won't know for sure until we do a bone marrow biopsy. This is when I start bargaining with a power bigger than myself, begging for the labs to bewrong, hoping that they accidentally switched my blood with some random patient like in an episode of Grey's Anatomy. 

But that isn’t the case. They bring me up to what is now my temporary home, the oncology floor. My nurse, Stephanie, is helping me every step of the way. She brings me whatever I need, holds my hand, and when I lay on my side for the biopsy she never leaves. They have to not only get marrow from me but also chip off a piece of bone. Even after a few tries, their efforts to get a sample of marrow are unsuccessful. Later I find out it's because my marrow was too compacted with cancer cells. 

Now is the waiting game. It's Tuesday, November 18th and there is a high chance I have leukemia. I don't get confirmation until the next morning. It's a surreal thing when a team of doctors, pharmacists, nurses, a social worker, a nutritionist, and medical students walk in to your room for the first time. They explain to me that I have acute lymphoblastic leukemia and that they will begin treating me right away. This type of leukemia is aggressive and mostly found in children. They explain that because I'm young and in good health, they will treat this leukemia as aggressively as my body will tolerate. 

Since being diagnosed I've had 8 chemo treatments and today I will have my 9th. Luckily, I have only a couple side effects from the chemo at this time. I still have the energy to walk around the oncology floor many times a day and have a strong appetite. I know both will go at some point, so I take advantage of every spurt of energy, every weird food craving, and so on.

I can't begin to say how thankful I am for each one of you. Every donation, text, Facebook message, email, hospital visit...it's just overwhelming. I hope in time I can reach out to everyone personally but at this moment I have no words to say other than than thank you. I know it's not enough but like I said, one day I'll be able to better express how grateful I am.