Sunday, January 27, 2019

... post Stem Cell Transplant update

So I did it. I did a thing that would be able to give me my life back. The very thing that I was worried about to begin with, a Transplant...and so far it kinda sucks. 

So im not sure if you are familiar with my story but a short version is on May 17,2017 I was diagnosed with AML through the emergency room at my local hospital. I had been having symptoms since the previous March. I did my induction chemo ( which I was hospitalized for 33 days) and then did another 4 consolidation chemotherapies ( each being 7 days). February 14th 2018 was the day of my very last chemo. I was done and so happy! The summer was so amazing. I was able to go to the beach with my son and my step dad had bbq's, and I had energy andI was feeling totally great. Until my tooth. Yea a damn tooth ache brought me right back to the hospital. We were on a boat ride with some family and in the middle of the day my face started to swell. Nothing  was helping the pain so we rushed inland and I drove to the hospital. The ER was great with working with me since my ptsd was very high that night. They did X-rays and saw that I had an abscess growing in my tooth, i was very worried. The hospital staff made sure to tell me that I was most likely relapsing and that we caught it very early. I was sent home to go get tests done by my oncologist and pray (lots of praying). I kind of knew what the outcome was going to be. I had this horrible feeling in the pit of my stomach and I just knew what I was going to be in for. So, September 11th I got the call that I had relapsed and September 17th was the day I started chemo for the second time around. ( I was in shock, i was scared, i didn't want to die, I was so petrified). Once the induction chemo was over with I was allowed to go back home. This was about 4 weeks later ( october 20th). While I was in the hospital it was brought to my attention that I was going to need a SCT. Unfortunately my family would not be matches for me as my sister had cancer when she was younger and my parents would only be a 50% match. So my team went to the registry ( not sure which one but I believe BE THE MATCH) and was able to find a donor for me. I was and still am so grateful to the young man who decided to save my life. I am so blessed that god put this person in my life, it truly makes you look at things so much different. On Novemebr 28th at 12pm I was given my new Stem Cells! I was really excited and couldn't wait to get out of the hospital I was very determined to focus on what I had to do as a  patient so I could heal. Or thats what I had told myself. 

Before you can have your stem cells you get this mixture of chemo medications ( or at least I did) and they are the strongest chemo meds they give you before getting the new cells. well, that was like torture for me. I had the ABSOLUTE worst experience of my life in that hospital. At first when the chemo started I was a little sick to my stomach but was maintaining with what the staff let me have. The second chemotherapy they ran was a little stronger and made me diarrhea, really bad. I was crying every time I would go to the bathroom. I remember begging god for it to stop. It was like bleach and fire and the same time, all day. It felt as if my body was going through torture. Not to mention that I was feeling weak from having the chemo then I have too unplug the machine to walk it with me. It was a mess. But when they started the third chemo I started to have a reaction. My legs started to feel like they were burning and being cut from the inside. The pain was so intense, it was like nothing I had ever felt before. I actually recorded myself in pain to show the doctors what their patients go through. I showed them the next day. I felt like i had to be mentally strong and keep telling myself that I had to do this and that there is a light at the end of the tunnel. Which there totally was, I got to go home December 16th! I was so thrilled. 

so now I'm home, in bed, and now what? I feel like shit, I have no desire to do anything except to get to the bathroom on time. Every single movement I make takes so much energy. I can't just go from sitting down to standing up. I can't get myself dressed. I can't make food for myself. I can't go to the food store,do dishes or laundry. I have no energy. I didn't know it was going to be like this. Now granted, I have help. As much help as one person could ask for and more. I am thankful to everyone helping me with everything but sometimes you just want to do it yourself. 

I think thats the hardest part about this whole transplant experience. Its not easy. It's not cheap. Its hard. You need to have a committed team of supporters in order to get through this. I begged God many of nights for me to just get through the next day. I cried a lot because I was at my breaking point. But I stood tall and strong and put my fear aside and was ready to finish this incredible journey. 

Each day is different. I don't know how I am going to feel. If I will throw up, if i will sleep all day, if i will be able help make dinner, I just simply don't know and that's the hardest part for me. 

what would you be feeeling???

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