Tuesday, April 6, 2010

The big day

We spent Easter morning with Krista's family. We went to church with Krista's parents, and they had a wonderful lunch - roast, rice & gravy, field peas, and squash casserole. After that we went to the airport to pick up Patrick's dad. Patrick was a little on edge to say the least. We picked up his dad, and then there was a long drama about returning the rental which was apparently my fault. I know that his hostile attitude was a product of his stress and worry, so I let most of it slide. I finally did have to say, "Patrick, don't yell at me. This is not my fault, and I am doing the best I can to fix this." I felt pretty bad fussing at him in front of his dad, but I could only let so much go. As soon as we got checked into the hotel, he gave me a sweet hug and apologized for being ugly. We laid in the bed a little while, and then he suggested that we get in the tub. The tubs at the Rotary House Hotel are pretty big, so it was like being in a hot tub without the bubbles. We laid back, relaxed a while, and talked a little. He took off his wedding band, put it on his necklace, and slipped it around my neck. "Hang onto this for me." I brimmed up a little, but I didn't let him see. After a while the water started to cool, so we got out and got dressed for dinner. We met Patrick's dad at the elevator and had dinner at the hotel restaurant. Patrick got a fancy steak, I got a seafood pasta dish, and Mr. Bill got what was arguably the tallest burger I have ever seen. The food was ok, but I would have much preferred to cook Patrick dinner. Pilaue, corn on the cob, fried okra, sliced tomatoes….let me stop. I am hungry already, so let me not make it worse. We laid in bed and watched a movie, a little Reno 911, and then we turned off the light. I laid beside him, kissed him on the back of the head, and and just held him until I fell asleep.

We woke up this morning around 5:00. Amazingly, I slept really well last night. I woke up with a real peace in my heart. I got up, washed my face, brushed my teeth and got dressed. I had planned on taking a shower, but Patrick stayed in there all morning. Sometimes there is nothing that washes your soul like a shower. Since we found out about Patrick's recurrence I have spent many hours in the shower. Standing under the water with my eyes closed and the hot running through my hair and across my face. Sometimes it is the only thing that can wash away the fear and tears. I hope that Patrick felt that way this morning (minus the hair part). We left the room around 5:45, and met Mr. Bill at the elevator. We trekked through the labyrinth of long winding hallways to the surgical check in area. It was filled with people. They all had the same look on their face - exhaustion and worry. I am sure that we were no exception. We checked in and were greeted by a very friendly attendant who gave us paperwork to review and sign. They gave Patrick an arm band with his information on it, and then we sat down. As we finished up the paperwork, a nurse began barking out orders which irritated me. I am a far cry from a morning person, and looking at the faces of the others in the room, I was not alone. "One person with you, follow me, and there will be updates every two hours. We are not going to hunt you down for updates, so if you miss it you will have to wait until the next check in" We walked back, he got undressed, and put on his gown. We called Cameron, and after he talked to her he had a few tears in his eyes. I went to wipe them away, but he brushed them off before I got the chance. I stepped out to the waiting room to get Mr. Bill so he could visit with Patrick a while. I went back in, gave him a kiss, and I watched them roll him away.

We got updates every two hours or so. Mr. Bill and I sat in a very busy waiting room. We talked, read, napped, and waited on our updates. At the first update we found out that they hadn't made the first incision until nearly 8:45, so that 10 hours didn't truly start until then. They said that his vitals were good, he was stable and doing well. Mr. Bill and I had an early lunch seeing that we had not had breakfast. By 11:30 I was starving. I took Mr. Bill's order - Philly cheese steak and a Coke. I had veggie stir fry with extra kick. As I was getting orders, I mentioned that I was fasting sodas until Patrick got out of surgery. I have been fasting them since we found out that there was abnormal tissue. I believe in prayer and fasting. Fasting isn't only about giving something up, but it is to spend that time when you would be eating/drinking/doing whatever it is that you are fasting praying for the person you are fasting for. I think a lot of times people forget that part. I haven't had my Coke yet, but I have a McD's Coke with extra ice in my very near future. Our 12:00 update was pretty much the same. Stable, vitals are strong, and they are working on him. After that update, Mr. Bill went to his hotel to check in, and I pulled out my computer to work on some work stuff.

Our 2:00 update was closer to 2:30, and they told me that the doctor would like to see you. It was still early, so I had a wash of emotions. It was the feeling I got as a kid when I was called to the principles office with no idea why. There is the fear of "What have I done that I didn't realize I have been busted for?" and then the excitement of "Maybe I was just selected as student of the month." I went into the consultation room just down the hall from the massive waiting room. The rooms are pretty unremarkable. A few chairs with fabric that reminds me of a … well hospital. Blue, green, brown, and very ugly. Dr. Kupferman came in and delivered his update - they were all but done and just closing him up. I could hardly believe it! Ten hours had melted into 6! He said that they had taken out the bone at the base of his skull, the irradiated tissue in his sinus, and a portion of the dura (the sack that holds the brain). He said that there was some tissue on the dura looked abnormal. He said it may be just some damaged tissue from last year or it may be cancer. They wouldn't know for sure until they got the pathology results, and that would take a few days. They took a very aggressive approach with very wide margins (Margins are the amounts of healthy tissue that they remove around the cancerous tissue). Depending on the results, Patrick may have to have chemo. My brain started to run with that, but I had to stop myself. My grandmother said that you can only eat an elephant one bite at a time, and I was about to take more than a mouthful. He said that Dr. Levine would be out to talk with me as soon as he finished closing the incision. About a half hour later Dr. Levine came out and said that Patrick was doing well and they were taking him to the PAC unit (Post Anesthesia Care) He assured me that they had removed everything that looked abnormal and then some. I can't remember which one of them told me this, but his recovery time line is: two days in ICU, 5 or 6 more days in the hospital, a week of doing as little as he can, having his staples out next Friday, and then we can go HOME! He will have to come back in a few weeks for follow ups, and we will go from there.

After much waiting, we were allowed back to see him around 6:00pm. Mr. Bill and I walked back to the PAC unit holding each other's hand and both holding our breath. I didn't know what to expect. Both of his doctors told me that he "won't look as bad as you think he might." I thought he would look like he got hit in the face by a baseball bat. I mean, they virtually cut his face off, took out his forehead, dug around, and then patched it all back together. It was so wonderful seeing him. He looked incredible. He had a thin line of bandages from ear to ear across the top of his head and drains on either side of his head. They look like really big veins that run up his brow. They come out of his skin at the top of his head. He also has packing in his nose that sticks out of his nostrils some, but he wasn't swollen or bruised. I'm sure that will come, but it was such a relief to see how great he looked. I just smiled and smiled. Other than the drains that look like dog ears hanging from the top of his head, he has an IV in each arm and an arterial line in his right hand. It is there to get a accurate blood pressure reading. Last time he had surgery here, they had a little bit of an issue stabilizing his pressure, so they wanted to stay on top of it. Patrick seemed in good spirits, and not in horrible pain. He was extremely groggy, and a few times he trailed off in mid sentence, but all and all he was doing wonderfully.

After more waiting, they took him back for a CT scan and then it was off to the ICU Step down unit. It is where they send you when you need more than a regular room, but you don't need one nurse per person. Mr. Bill and I gathered our things and headed off to the 8th floor to wait even more. We had to wait for him to get transported up to his room and settled in. The two of us went into the ICU waiting area which is more like a waiting closet. There was a small round table with puzzle pieces spread across the top. I sat at the table and Mr Bill sat across from me at a chair beside the wall. I made a few phone calls, and as I was talking I put a piece or two together. After I got off the phone I told Mr. Bill how lousy I am at puzzles. After a little tinkering, he came to the table, and we spend about 20 minutes working on putting some of it together. It was a picture of a Christmas teddy bear in front of a huge pile of gifts and a tree. To say the least this was a far cry from Cameron's Abby Cadabby puzzle. It was fun. We chatted and before it was over we had put together a good section of the top of the puzzle. I was impressed with our puzzle skills. I hit a wall of puzzling, and so I went up to the nurses station to see how much longer it would be before I could see Patrick, and she said that I was welcome to go ahead back and see him. He still looked really good. Weak eyed, but still wonderful. Patrick can't pick his head up more than 30 degrees, so his neck and back get very stiff and sore, so Mr. Bill and I rubbed his neck and adjusted his pillow until around 9:00. Patrick really wanted to talk with Cameron, so we called the house, and she was still up. She shouted "Hey Daddy!! I love you Daddy!" Patrick told her that he would be home soon, and they would watch cartoons together when he got back. Then we called Patrick's mom and he talked with her for just a little while. Patrick's voice was getting weak, and he was starting to hurt some. The nurse came in and gave Patrick something for his pain, and he started to drift a little. Mr. Bill had to take a shuttle back to his hotel. Right before he left I went downstairs to get something to eat, but the cafeteria was closed. There is a little 24 hour snack bar, so I got a peach smoothie and a blueberry scone. The cornerstones of all well balanced dinners. I came back up, and we said our goodbyes. I gave Mr. Bill a long hug. I know I needed it. Not as long as we thought, but still an incredibly long day.

Now I am in the ICU unit with Patrick. He is asleep, full of meds and comfortable. He is underneath the prayer shawl that Poplar Hill Church made him. He has so many people praying for him. He is covered in prayer in spirit and in body. The rooms are incredibly cold. It is shocking how cold they are. I have on a pair of leggings, a long sleeved shirt, socks, and a purple velvet jogging suit. I am underneath a bright blue Snuggie and two hospital blankets. I can feel my toes. I hope that it keeps me warm through the night, because it is going to be a long one. Mary or night nurse is so nice. She is from India, and her last name is about 17 letters, most of which are consonants. I asked her how to say it, and it rolled off of her tongue like honey. I wouldn't be able to repeat it if my life depended on it. She is in and out checking his IVs, O2 stats, BP, and giving him various medications. I feel like I can rest now. I know that all day he has been in the best hands in the country, and arguably the world. His surgeons have countless hours in the OR, and brain surgery is just another day at the office, but now he is in mine (with my posse of RNs). It may not be clinically better, but I feel like I can take care of him like nobody else can.

I know that sounds silly, but that's ok with me. I love him, and love, like time heals all wounds.


  1. Erin, as I lay here reading this, tears stream down my face. Both tears of sadness that you and Patrick have to endure this fight again, but also tears of joy because oif the strength I've gained through your words.. You are an amazing woman! My prayers continue to be with both of you!

  2. Thank you so much Ruby. I am truly flattered. Sometimes I feel stronger than others, but it is so nice to have wonderful people like you in my corner sending thoughts and prayers.

    How is Ty doing?