July

I hope that as you are reading my blogs that you are able to get a better understanding of what I went through and am going through. My dream is that one day another cancer patient that has Leukemia will be able to read this and get a better understand on what is going to happen. With that being said. It is time for July!


Towards the end of July, I wasn't feeling well. I could barely take my medications and wasn't really eating. For me that is kind of a big deal, because I have been taking medications for a long time not just for the Leukemia but for other health issues. This was a huge red flag to me. We called the clinic and told me to get there as soon as possible. I got in and seen right away and was told that I was going to be admitted. Back into the hospital I went. I should really call it my other home, feels like I have spent more time there than anywhere else. Prior to my transplant I gained a bunch of weight in fear of something going wrong and me losing all the weight again, but I didn't until the July trip to the hospital. I was diagnosed with Acute Graft vs. Host Disease of the stomach and colon. I am not going to shy away from what I went through, so this is your warning. Here is what it means: "Graft-versus-host disease (GVHD) is a complication that can occur after a bone marrow/stem cell transplant in which the newly transplanted material attacks the transplant recipient's body." So to treat it was to suppress the immune response without damaging the new marrow. Medicines commonly used include methotrexate and cyclosporine, either alone or in combination. Well I was already on cyclosporine, they were big nasty pills and they smelled too. Yuck! Ross wouldn't even kiss me after I took them. I wouldn't either, they were nasty. So that hopefully gave you a better understanding of what GVHD. So I had it in the stomach and colon. It felt like someone was eating my insides. I wasn't allowed to eat anything and could only have something to drink when I took my medications. So you could see where my extra weight gain would be coming in handy. There were several nights were I would wake up having to go to poop and wouldn't even make it out of the bed. Or I would wake up and have already pooped myself. I went through a lot of clothes those first few days. Then they put me into diapers. I felt like I needed a binky. The diapers didn't really fit and continued to make a mess in my bed every few hours. Either my mom, my sister or Ross went and got me some pull ups. Finally something that fit and didn't make me feel like a baby. You really have to swallow your pride to have someone else clean your butt and legs off because you are too weak to do it for yourself. I didn't realize how hard it was going to be after the transplant. There are so many possible side effects from the transplant itself and the medications. I remember how aweful I felt from not being able to eat and losing everything that was inside of me. I felt like I was back to square one. I was going to have to rebuild my strength again. Never did I doubted myself and my abilities to beat any situation. I was after all named the Pink Warrior by the hospital staff. I was always there to entertain them since I was one of 30 patients and was probably the youngest. I had a pediatric Leukemia but got to hang out with the old people. I guess it's better than hanging out with the kids that would probably drive me nuts. So let me explain something about what I was diagnosed with. Acute Pediatric Lymphocytic Leukemia, which "normally" only is found in kids. Since I was 29 I was told old to be with the little kids and also did not get a doctor that is used to dealing with kids and this disease. Instead, I am over in the old folks home with doctors that aren't sure how to treat me. It has all been a guessing game. I learned to stop asking certain questions. If you know me, I have never been know as "normal" so why would I be surprised to come down with a disease that was rare.
When I was in the hospital I have to fallow a very strict diet and make sure I walked around the halls a certain amount of times. I was very weak and could barely get around. I couldn't believe that I would have to be fighting for my life again, luckily I went to the hospital before it got too bad. I think that was my third time of feeling like I got ran over by a train. Like I said before, I will stay positive and keep looking forward. On that note, don't forget that your life can end at any moment. I stay strong because I want to live!