December 19th, the day of my 15th surgery, was one of those days my surgery was pushed back due to emergency cases. I have been that emergency case more than once, so I never complained to the nurses or doctors about having to wait, but it definitely was not fun. I feel so lucky that my mom and dad were able to be with me every step of the way. There were so many people in the hospital that didn’t have anyone with them and I still feel really sad every time I think about that. My mom and dad were constantly getting me water, food, and would just sit there with me every single day. My mom had just started a new job in Massachusetts and used up all of her PTO to be with me, then eventually took a 5 month leave. Luckily, her boss was and is very understanding and supportive of the situation. I still feel guilty that my parents only had one income for 5 months (my dad works remotely so at least that worked out) but no matter how much I begged my mom not to take a leave, she was always going to stay with me.
When I finally got out of surgery, it was dark out. I hated that more than anything (well, almost anything at that time). It was just depressing not being able to look out a window at all while in pre-op for hours and then coming back to a hospital room with a view of a dark sky. That night, I had a nurse who took care of me once before. She didn’t have much of a personality, or at least didn’t show it, and that night she must have been in a bad mood. She pumped my tube feeds up to the max when it was known (and written in my chart) that I needed them at a slow pace or else I would get sick. I tried telling her but she didn’t seem to care and once again, I was throwing up. The NA (Nursing Assistant) was even worse. I asked her for a couple face cloths to wash my face/neck and she was combative about getting them for me and then ended up throwing them at me once she finally got them. Needless to say I was very upset. Luckily, patients can create a black list of nurses/NA’s they don’t want to see again (and in some cases, doctors). Those two were the first ones on that list and I didn’t have to see them again for the remainder of my stay.
My brother and sister flew in for Christmas and I was so happy. Even though I wasn’t feeling great on Christmas Day, it was so nice that all 5 of us were together. My favorite Christmas movie of all time is The Family Stone and I make my family watch it every year. Having all of us together on Christmas and watching my favorite movie was one of the best moments in the hospital. My brother and sister both flew in from NYC multiple times to see me and nothing made me happier. My brother Joe ended up moving to Charlotte for a job shortly after and was living in my house. I was hoping he moved there solely for the job and not for me, but I never asked him because I really didn’t want to know the answer. Either way, it brought us so much closer and I’ll forever be grateful for all the time we spent together. Me and my sister Meg are two years apart and have been attached at the hip since I was born. I don’t know what it’s like to have a little sister, but I’m lucky she let me tag along with her pretty much everywhere.
By this time, it had been a little over a month since my emergency lobectomy. It honestly felt I was living a different life, and I guess I was. I was in a foreign place with new people (besides my family) and all of the sudden was this sick, wounded person/science experiment. My sense of humor became very morbid. I would make jokes about my appearance, mainly calling myself Frankenstein and laughing at my flat butt, when on the inside I was terrified, devastated and angry. I remember the first time I saw myself in the mirror when I was strong enough to stand—I cried. I wanted to crawl into a hole. I felt as if I looked 3 times my age because of how sick I was and how much weight I was losing.
It seems like someone tells me I’m the strongest person they know on a daily basis. That isn’t something that bothers me—I mean how could that bother someone? It feels like the biggest compliment ever but there have been so many times—including the time I just about died inside when I saw my reflection in the mirror—that I have felt like the weakest person I know.
I felt like a shell of myself; like I wasn’t really there and I was just watching this sick person waste away. I basically lived in the OR and had completely changed physically. My weight has fluctuated in the past probably because of my height but this didn’t feel like that. Stepping on the scale and seeing double digits instead of triple—that feels scary and it’s not pretty. My body rejected almost every kind of food I put into it; so I mainly had to stick to applesauce.
Before all of this, I was an active person; I danced for 14 years, worked out 3-4 times a week and was proud of my body. I was healthy, working (two jobs at one point), and maintaining a social life. It all seemed like it was going well and I had it together. Then one day I woke up with joint pain and now I’m here—writing about how I survived a 6 month hospital stay which consisted of almost dying 4 times.
One of the lessons I’ve learned from this experience is that as bad as things got, it was easier to get by with family and friends near—and laughing helps—even if it’s at yourself. If you’re in the hospital and don’t have family or friends around, get to know your nurses, NA’s, and doctors. They were a huge part of my stay as well and really lifted my spirits during some dark times.
Dear Vasculitis 