I guess when you start a life changing medical procedure, things will shock and surprise you. You read, you prepare, you think you got all basis covered. Well, not really. I have to first and foremost thank my amazing MA and nurses at Prentice. I was a little bit of a train wreck after the catheter incident that will forever be known as “Pee Wee’s Biggest Adventure Yet”. I am not a big crier. Typically, unless I am taken off guard ot hurt by a loved one I trusted, I don’t cry . I don’t know if it was the steriods, the crazy amount of drugs or the surprise visit from pee wee, but I have done my fair share today. Don’t get me wrong. Mobilization day 1-2 itself was easy. One quick chemo dose followed by 24 H of fluids and lots of meds to prevent side effects. I had nausea and headaches that were very quickly taken care of with the nurses help. Pee Wee did have his benefits… Without him, I would have been up all night. But, I just couldn’t help myself. I talked to Rosie on FaceTime she tells me of little boys at school making fun of asian people and their eyes. I cried (after I hung up AND after I told her to speak up and educate them), I talked. To my sister in law Amy and my amazing nephews … Cried, I thought about our hotel rooms and the sickness my parents and I have battling… I cried, I thought of Fran and all the hurdles she battled to get here and I cried, I thought of all the friends family and supporters who are out praying and sending love to me and I cried. Mostly, I thought of Rosie and Fran leaving and that made me cry…. Well, that and Pee Wee!
Before I knew it, we were released (about 1:30… PWH is amazingly organized). We went downstairs and stood in front of a PWH sign to take a picture when a volunteer told us we were not allowed to take photographs near any signage. I didn’t care much and started to walk away, but not before the security guard started to defend my picture taking rights. It was kind of hilarious, so we went outside.
Fran and I beat my parents and Rosie home today. They took Rosie to the children’s museum earlier that morning and she was on cloud nine. We came back to my room… Gloved up and got to work, we used hospital grade wipes, gloves, and masks and wiped ever possible surface down in the room. We had to through every opened food container away in the event it was contaminated with the McD plague. 2 garbage bags full (that made Fran cry). We prepared the baskets of laundry to be done for any coats or sweaters that may not have been washed. My parents got home and my poor father (the sickest of us all and patient 3) looked like he was terrified to set foot in the room. My mom and Fran quickly moved their clothes and bags around so Rosie and her would be in my suite on the pull out while my parents had theirs. Then I got nauseous again, took a pill, took a bath, ordered food and then the best part of my day happened. It was my miracle cure for all the emotion I felt that day and it was exactly what I needed. It was the last time I cried.
the food was delivered shortly after this photo was taken, I have no ida how any of it was because I slept, and slept, and slept… Until about 9:00 tonight. I woke up nausous and with a headache. Took some pills, ate an English muffin (that by the grace of God was in a never opened package) had some water and gingerale. Heard all about how Rosie went on the elevator and the door shut so she went to the 1st floor (she was affraid if she stuck her arm out it would get cut off) and returned safely to grandma and Nona on the laundry floor. I heard about the children’s museum and got attacked by a fake bug that she got there. Finally I returned some texts, reported a package lost and then found to Amazon. Returned some texts and got to work here. It has been a very long day dispite a 4 hour nap.
I don’t know what I would have done without Fran and my parents (patient 0&3). I know what it is like to have people you love sick. I’ve lived a great deal of my life experiencing this. I am so blessed and in awe that everyday I get to have these people in my life who care and love me. I Thank God everyday that I have the perfect daughter in Rosmary and that I was given the chance to take part in this miraculous treatment. One that will prevent a future where my daughter is my nurse. One where she will have to feed me, dress me and morn for me while my body lives on. That was the road I was on. Dr. Burt and God are making that life fiction and giving me a life to live to the fullest. I pray that I inspire even one person to peruse HSCT. I will tell it like it is. Good, bad and ugly…. And by God’s grace I will live a life worthy of this miracle.