Please note: The next couple of posts from Derek and me are going to be a bit serious. If at any time you need a little break, head over to Liver Lovers Unite! for some comic and/or cute relief.
Welp. Today was just a tad more difficult than yesterday. In the words of our good friend Emily: “Shit’s gettin’ real.” Yes, shit is indeed getting real.
We got up extra early because driving from Hot Messchester, New Hampshire to the fine state of Massachusetts involves a whole lot of traffic. My appointment schedule said I needed to check in for my CT scan by 8:40. We checked in at 8:00 ish. They were very kind and agreed to take me early. I filled out some forms that confused me. The forms asked if I had ever experienced things like: fever, cough, nausea, vomiting. Um, yeah sure I have. Not right now, but yes at various times in my life I have experienced those things. I looked at Derek and said, “I don’t know how to answer these questions.” His response: “Welcome to my world.” Ah, touché. I went back up to the desk, explained my confusion to the nice woman and she assuaged my fears. The questions don’t apply to healthy people. She sent us off to a waiting room, where we waited. (I love alliteration, don’t you?) Someone called my name and had me change into something more comfortable. Read: giant drawstring hospital pants and two gowns.
One of my fears going into this was that they would make me drink something before the scan. As frightened as I am of needles, I was definitely more keen on having the dye injected into my veins. As we sat in the waiting room, I watched fellow patients whose johnnies fit way better than mine, (seriously, I looked like I’d been loosely swaddled in king size cotton sheets) sucking on straws. I squinched up my nose and tried to breathe normally. A couple minutes later a nice gentleman called my name and walked me back to a room, sat me in a chair and said, “Ok! I’m going to put an IV in your arm!” Relief about not having to drink a mysterious substance quickly gave way to panic about having an IV inserted into my arm. I admitted to my wussiness immediately and he agreed to take good care of me and to make sure I was properly distracted. We talked as he worked away on my arm, my head turned as far to the right as it could go, to avoid looking at what was happening to my arm. Oh my! Look at the amazing door handle! Why don’t I just stare at that and imagine how it’s made. He then did something I will be forever grateful for: he explained everything that was about to happen to me, very slowly so that I could process it. Then he told me that it would be easy and I would do great as long as I remembered his advice.
The CT scan is easy. Sort of. I was lying on a flat surface, my right arm bent behind my head, my left arm perpendicular to my body with my hand resting on the giant donut that my body would be passed through and a warm blanket on my feet. As I lay there, waiting for the test to start, I tried to remember the advice I’d been given. “Breathe the exact same way every time they tell you to breathe.” The test began and a disembodied voice said: “Take a breath! Exhale. DON’T BREATHE!” Then, “Breathe normally.” Every time he said ‘breathe normally’ I would count to myself, “One, two. One, two.” In then out. In then out. That happened for a while and my body stayed rigid, but every time he said, “DON’T BREATHE,” my big toe would involuntarily twitch. Eventually the technician came back into the room and told me she was going to inject the dye through my IV. The guy who put my IV in had told me exactly what was going to happen when the dye was injected, but she told me again. “You will feel a warm sensation, not unlike a hot flash, starting in your head and you may taste pennies in your mouth. The hot feeling will travel through your body and when it reaches your pelvis it might feel like you’ve gone to the bathroom. No matter what, don’t move.” I braced myself when the dye was injected but felt ill prepared for the feeling of cool liquid traveling through my veins. I started to panic a little. The heat started in my head just like they said it would. I had a brief, odd taste in my mouth and then the heat spread down to my pelvis. I think because they warned me, I didn’t feel like I had gone to the bathroom, it just felt strange. As soon as the hot feeling came, it went. I was told, “DON’T BREATHE,” a few more times and then it was over. The technician came back in and told me I was all set. Tears welled up in my eyes, I’m not sure why. I explained that I had been told this was going to take two and a half hours. She shook her head and said, “I don’t know why they told you that, this only takes 20 minutes. Are you also getting an MRI today?” I told her yes and she said she would leave the IV in my arm and that I should keep the johnnies on for now. I left the room in a daze.
As soon as I made it back to the waiting room and Derek looked up at me, I burst into tears. Honestly, I don’t know why I started sobbing. I think it was partially a fear of the unknown, or maybe I was relieved to see him, or maybe all of this was finally hitting me. We sat for a moment, as I tried to explain why I was freaked out and why I was crying. I eventually made a joke, wiped away the tears and we walked over to the MRI department. It was 9:00am, my MRI appointment was scheduled for 12:30pm. When I arrived I told them I was super early and they said no problem, they could take me at 10:00 am. We sat in the waiting room and I watched people in beds get wheeled in for MRI’s. Right at 10:00 am they called me back and had me lie down with a breathing monitor on my abdomen and then placed a big heavy blanket thing on my chest. Derek said this would be my favorite part of the MRI, and he was right. If I could sleep with the lead blankets the dentist puts on you when they x-ray your teeth, I would be a happy lady. The technician gave me an emergency call button and then I went into the tube head first. Derek told me not to be scared of the tube because the end by my head was open. When I was safely inside I checked and he was right! It was bright inside the tube and I was surrounded by white. I noticed a teeny, tiny black spot in the vast field of white and stared at it. After 35 minutes of very loud noises and being told to breathe and not to breathe (she had a kinder voice and I didn’t feel like I was being yelled at) I was pulled back out of the tube. “That’s it?” I was so confused, I had prepared myself for more.
“Yup, you’re all finished,” she said.
“Don’t you have to inject me with dye too?”
“No, we looked at the scans, you’re all set.” Then she took out my IV, which I thought would hurt, but it didn’t. I put my shoes on, and got my clothes out of my little locker and got dressed. As I was standing in the changing room, staring at the pink plastic drawstring bag that held my clothes I thought, perhaps I have begun to adapt. The CT scan had completely freaked me out, but the MRI was fine. While I was inside that tube I took breaths in and out, stared at a tiny little black dot in a field of white and thought, I can do this. I am doing this.
When I got to the waiting room Derek looked up at me. There was a hard look in his eyes that I rarely, if ever, see. I waited until we stopped at a gas station on our way home to ask him what was wrong and he told me after taking in a deep breath. “I am angry. I am very angry with this disease.” He got out to fill the car with gas and as I waited for him to come back, I thought about his anger. Damn right he’s angry. He should be, this disease is a son of a bitch. As we drove home he said to me, “I can handle having this disease. I’m just having a hard time dealing with you having to handle it as well. Today was hard.”
Today was hard. We both got a taste of what the other person has been going through all these years. Derek got to experience waiting for an unknown amount of time, not knowing what shape I would be in when I emerged. I got to experience the sometimes dehumanizing experience of being subjected to bizarre tests and having needles stuck in my arm. We are a team, and sometimes I think that I want to do this so I can understand, if only a little, what all of this must be like for him. He is my little black dot, in a vast field of white. I look to him for strength with the hope that I can reflect that strength right back to him.
One Reply to “Live Donor Update #3”
I am glad you have each other. You are strong people.derek will be just fine.