I've accomplished nothing in such a long time. Since being home from the hospital I just don't feel like doing anything productive, I lay around my house and stare at social media which is both mind numbing and disappointing. I have just been through what could possibly be the most challenging event in my life, so many emotions went into the transplant and now it's over. Everything moved so fast it's hard to fathom that I actually went through it all. If I didn't have my prednisone moon face and bald head glaring back at me in the mirror everyday I don't know if I would believe I actually did go through it all. I deserve a break, to just rest. The calm after the storm. I just took too long of a break and realized that my life now consists of sitting in my house, going for occasional car rides but never inside facilities because of isolation, and visiting my doctors twice a week. It's so very boring, it's like I am stuck in this place of being bald and unattractive. That's such a shallow thing to say, or even feel considering how strong I am, I shouldn't care what I look like. But at the end of the day when all of my supporters are asleep and my brothers are drifting into sweet dreams I lie awake, staring at my ceiling. And I don't feel strong, I feel pathetic. I feel pathetic for not utilizing this time to write my book or write music. Work out even! I was so content with myself before all of this happened and now I am disgusted with myself. I'm sure I will figure out a way to deal with it but until that time comes I am going to drown myself in homework. It's so hard to start but once I have started it, It's nearly impossible to get me to stop unless the assignment is complete. So I think Beck said it best, speaking for all of us at some point in our lives.
0 Comments
I couldn't stand having to talk to a therapist while in the hospital. There was one that I liked, but the other one just felt like a snitch to me, she also tried to tell me I had depression which I did not nor did I feel depressed, I just didn't like talking to her. The one thing that I will always remember from these unwilling therapy appointments is when the one I didn't like told me that I don't trust my body. I had never found the words to describe it, but she did. My body attacked my kidneys when I was seven and now it's attacking my marrow, I can't trust myself and that's a hard thing to do because I am stuck with myself for the rest of my life. This week my kidneys were enraged. Cyclosporine, an immunosuppressant, and Valganciclovir, an Anti-viral, caused my creatinine to sky rocket and my BUN to follow suit. I consumed 134 oz of water in one day just to try and combat these harsh numbers but it didn't matter, I simply retained all of the fluid. My ankles became swollen and my back grew very painful. Now normally if a medication is causing a vital organ to nearly fail you will simply stop the medication, but that is hard to do when the medications causing it are associated with you staying alive. The cyclosporine keeps my immune system suppressed enough for the new donor cells to begin to fully function, without this the graft wouldn't work at all and I would probably end up with graph vs host disease which is very painful. Valganciclovir was keeping my CMV under control until my D.C. trip which is now in April. Infectious Disease told them not to take me off of the anti-viral no matter what because if my CMV starts ramping up too early and the T-Cell Therapy in Washington isn't ready yet, there would be a slippery slope. My doctors didn't listen, and they have taken me off of it while lowering my cyclosporine dose. At the end of the week my kidney levels were back in a normal stable range and all the symptoms I had been having ceased. I was so relieved, but I am also scared because I don't want all of my organs to become inflamed from CMV. It's a fine balance and I am praying for my doctors as they are the ones calling the shots. The title gives it all away. I came home. For the first time in three months I came home and I saw my brothers. It was a day that I won't forget filled with love. I walked up my wooden steps and saw a sign on the door that said "Welcome Home Corinne!" there were balloons tied to the porch as well. The door swung open and Liberty and her family were waiting for me with Brownies. They don't know this but the chemotherapy changes my tastebuds and I can't stand chocolate now, I didn't tell them that though, I just ate the brownie and suffered in silence. Moments later I went into my room, now what I was expecting to see what my bare walls, with nothing to conceal the suffocating white walls. What I got was an entirely new bedroom, new tv hung on the wall, a head board for my bed with lights strung across it. Framed pictures of myself all around the room and a giant mirror. A black and white theme decorated my room and I fell in love immediately. Liberty's family and tons of others who helped re-design my room deserve so much. The amount of selflessness that is required for everything they have done for my family and I is beyond belief. I have been sleeping in my own bed. It's hard to fall asleep now, I take medicine to aid the process, but nothing feels better than being able to roll around at night in my queen as opposed to waking up drenched in menopausal sweat in my hospital bed, although at times that was comfortable too. Hopefully I can stay at home for a while and don't end up right back in the hospital. I still go for check ups twice a week but that's better than monthly stays. I am so grateful for my life and all of the people in it. Prom. Something that I will not be able to attend as a senior because of the many germs carried by a student body. Prom. Something I would love to attend if my immune system wasn't as weak as it is, but unfortunately this is my life. So this week I had my own prom. 1920's theme! Great Gatsby extravaganza with all of my nurses and doctors. It was a lovely day that the staff planned for me. I dressed up in an authentic flapper dress that was donated to me, I was picked up in a 1941 Cadillac Limo and driven around Gran Rapids before arriving at the front door of the hospital only to be greeted with a red carpet. A celebrity is what I felt like. Cameras flashing and my arm in another guiding me towards the party. When we got to the 11th floor I saw all of the staff and they were dresses up as well! I had created cute invitations prior to the actual dance so they knew they were coming, I just didn't expect them to be dressed up because it was a work day, they took time our of their work day to do this. It was amazing. We all danced to Bang Bang by Will I Am, then shared cake and sparkling grape juice. Everyone toasted to me and my family, I felt that I should've made a toast to them, thanking them for everything that they have done. As I was about to do it my mom did. For some reason I couldn't get the words to escape my throat, it seemed like saying them would be so final, like this is the end of my journey, which is far from true, but I won't see many of those faces for quite a while if ever again. About a week ago I took an AP Bio test and received a 93% on it, I took it while I was getting IVIG (the IV med that caused my meningitis) and IV Benadryl. So I was incredibly out of it to say the least. My doctors decided to take the test as a group and see if they could score higher than me. Well they ended up getting a 65%, so I felt pretty good. This week we found out the results of my bone marrow cellularity, 65%! Ironic how horrible that number was to them and how great it was for me. I was told that all of my cell lines were there, they were babies, but they were there, So everything should be working great right! I wish that was the case but of course, that's way too easy. Because of the CMV Virus in my system I have to be put on a drug called Valganciclovir until I am able to fly to Washington D.C. and receive a special T-Cell Therapy that will wipe the virus out completely. A side effect of this drug you might ask? Suppressing the bone marrow. My platelets have gone up and above 50,000! It's been a long time since I was above that amount. My white cell count is slowly creeping up too! My red cells haven't budged though and I wish they would because it would be nice to have more energy let alone the appropriate amount of Oxygen. For now I am still in Renucci and it is getting old fast, a small room and no where to go because it is too cold outside and I can't go out into the hospital lobby because there are too many people and I am not allowed to be around that many people. It is hard but I hope that I can return home soon. (This is my doctor, Ulrich Duffner. He's German) Imagine the worst migraine you have ever imagined, and then imagine it 10 times worse than that. A medical mystery I always seem to be, it's almost like no one believes me at first, it takes something truly terrible to happen to me in order for something to happen that will stop the problem. This week was migraines, which I was experiencing as an in patient, but not as frequently. This week in renucci I was woken up in the middle of the night with some of the worst pain I've experienced in my life. All week, I took Norco like a mad woman and would run out within two days. They would only give me eight at a time. Eventually the Norco stopped working and I was begging my mom to take me to the ER for IV Dilauded, that's the only thing that I knew of that worked, so she took me and unfortunately at the same time I got there, a horrible trauma accident arrived too, so my migraine wasn't on their top priority list. Eventually I received my drugs and the pain faded as fast as it had come on, and I could smile again. My doctor came to see me and admitted me, so I ended up back in the hospital where I could received IV Dilauded around the clock, but they weren't hardly giving me enough. They ran tests took pictures but nothing looked off with my brain. They tried medications and they failed. I think they thought it was all in my head, or that I wanted pain meds. I always want pain meds, but I wasn't faking it, and I needed them. Then they suggested that it might be a pressure thing, so I got a spinal tap (ouch). Sure enough the spinal tap revealed aseptic meningitis,caused by the medication IVIG. Once they found out I wasn't faking it they sent me home with a script for Dilauded, I didn't even have to ask. They ended up fixing the problem with steroids, one dose of prednisone took my pain from 8 to 0 within a few hours. It was amazing. I still feel good now and I hope that the meningitis is gone, and it never returns. 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. 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 |