I moved into the renucci house. It's like an apartment attached to the hospital, and they just finished renovating for transplant patients. They created a small little home for us. Two beds, one bath, a kitchen and a living room. It's much nicer the I expected it to be and I am grateful for that. My mom and I are staying here because I have to go to clinic every day for blood draws and to see my doctor. If we lived closer we would be able to just go home, but my mom doesn't want to drive an hour and 45 minutes twice a day, everyday for multiple weeks. Also there is a rule that you can't live further than 30 minutes from the hospital if you're a bone marrow transplant patient. If something were to happen to you then you need to be able to get to DeVos as fast as possible. I walked downtown, I love the little freedom I have. Anything outside is okay, I don't even have to wear a mask. I just got to explore downtown Grand Rapids and it is a beautiful place. It was a little chilly at first but the sun warmed my head again. I also have realized how reconditioned I have become from this hospital stay. Walking up the hills hurt my legs and tired me out so much we had to take breaks on the way back. My joints have started hurting as well. They brought up physical therapy as an option but I hated that inpatient and I can't imagine I've made a 180 since then. I just want my strength back so I can dance. I want my hunger back so I can enjoy food. I still force myself to eat around my 30 pill meals. I enjoy living here I really do, I just feel like a sick person. Like a hospital sick person.I get horrible headaches during the day and the only thing that takes it away is norco but they don't want me on that for a long time because they don't want my addicted. I wish they were in my position so they could understand.
0 Comments
This week was an exciting one! The first week in months that my ANC was above 500! 904 to be exact! I also engrafted, meaning my ANC was above 500 for three days straight so my donors marrow is officially taking over my empty marrow. This week I left my room for the first time in two months. It's amazing how much change takes places in a small room after being trapped inside of it and how little changes outside. I was pleased to leave my room and see my nurse friends laughing in their usual stations. The other patients walking around the floor that I haven't seen in 60 days. I went outside and tasted the sun. It kissed my head! I am bald so it felt so very good to be able to feel the sun in a new way like that. I wanted to lay in it all day, but because I am on cyclosporine I can't, sun interacts with the drug. This entire process can really drag a person down I feel. I wake up and take about 30 pills for breakfast, as if that isn't a meal itself I have to force myself to eat some form of nutrition so the pills can dissolve safely. It's a trying time. Some days it feels nearly impossible, but when I went outside and felt the sun it reminded me of how free we are to explore. I find hope in that. People were walking around, and the wind was a blessing guiding them where they needed to go whether they knew it or not. I felt hopeful, for the day that I am free to walk around like everyone else and experience life again. Meet new people and see new things, feel different ways and taste different treats. I am in isolation until July 2nd. I can't go into public facilities at high traffic times, I can't go to graduation, I also can't eat out until then. Can't eat fruit that doesn't have a hard peel, can't eat vegetables that aren't cooked. It's a challenge but the reward is so worth it. This week I took a shower and nothing was the same. I woke up the same, picked out my clothes the same, turned on the water the same, undressed the same, and got in the shower the same. I washed my body the same. I washed my hair the same. Then I rinsed, and it was different. As my fingers made their way through the soapy tangles, they were unable to escape it. My hair, pulled away with them and I saw my first chunk of hair hit the floor of the shower. Vigorously I ran my fingers through my hair trying to decipher if this was really happening and trying to make it stop but it didn't stop. My mom said you couldn't even tell that any had fallen out because my hair was so thick. The morning after that I woke up around four after an awful night of little rest and began viciously running my fingers through my hair until my handle was full of strands each time. I created a pile on my bed and it looked like a small animal. My plane was to do this until I got the very last strand but no matter how much I did this there was still too much hair. So when the sun rose I went into the bathroom and began to run my fingers through it again. You could tell now, my hair was very thin and pathetic and again, although there was barely anything left on my head I still couldn't get it all off by my hands. So I got a pair of scissor and cut it as short as I could. There were patches everywhere and I looked like an aging man. My mom laughed. Then she cried. It was a reality we both weren't ready to face. One of the child life specialist came and shaved the rest off for me and there I was, a smooth bald head. I didn't know what to think or say, I wasn't bothered but I wasn't happy. I didn't cry and I don't know if that's because of my antidepressant or if I truly accepted it. I think I just accepted it, I really didn't look that bad. The chubby cheeks from the steroids is what makes the bald so bad. If that wasn't there I would be 100% okay. So anyway, this week I took a shower, and nothing was the same. This was it. This week the defining moment of my life, the bone marrow transplant. The only thing saving my life although it may seem like it's destroying it now. I am in the ICU and had to have my transplant in the ICU. My blood pressure goes really high and then falls very low at times and the nurses and doctors feel more comfortable with me in the ICU. I don't enjoy being in the ICU. There is a lot of light, it's hard to get sleep and this is my second time down here during this stay. It's scary, I am on the NICU so I am surrounded by a bunch of babies that were born with heart deformities, which breaks my own. I couldn't feel the marrow going into me. It was just like a regular blood transfusion except a life changing one. I haven't been sick for a long time, but it feels like a lifetime. I know it's too soon to even be able to tell if it's going to work but I hope it does. A life without waking up at 6 am to go get blood draws, get to where I need to be, only to receive a phone call that my counts are dangerously low and I need to leave where I am and drive two hours for transfusions seems absurd! Not missing weeks at a time to stay in the hospital for five days because of a neutropenic fever and then go home for two days only to return for another five days, due to another neutropenic fever. This new life will be filled with Gods desire for my life and I have never been more sure that it's His voice that I want to follow. These worldly things mean so little to me now. Worrying about college parties to fit in or drinking and experimenting on the stupid things in life, when I can be extraordinary. When I can travel anywhere and help someone in need, show them the love of Jesus. That is what will matter at the end of my life and I want to be able to say I accomplished that. And because of my donor I will be able to. |
AuthorWrite something about yourself. No need to be fancy, just an overview. Archives
April 2017
Categories |