normal |ˈnôrməl|

Our last few days have been rather uneventful. Patrick is pretty weak, but he is getting stronger every day. When we got to Krista's house after checking out of the hospital Satuday, we walked in to find two little girls sitting on the couch. Krista's mom (Donna) and step-dad (Foy) are very involved at their church, and while the little girls' older sister was helping Donna work at the church, the girls were watching a movie. Patrick can't pick up anything more than 5 pounds, I had to bring in our luggage. While I was dragging in our suitcases, Patrick sad down in the living room, and the little girls started jabbering away about the movie they were watching. "Wanna watch a movie with us? It's about a princess, and she is magical, and Ohhh, this part is really funny, and her magic spell isn't working because of the evil witch." Poor guy. After getting settled in, I went downstairs, had dinner, and then we all went outside. The weather here is beautiful, and after a week of being stuck in air that had been hepa-filtered to death, breathing in fresh air was better than a cold drink on a hot day. The girls were bubbling with the excitement that can only come from an 8 year old. They asked if we knew how to play charades to which I replied "I think so, but remind me of the rules." As soon as they were done giggling out the directions, they commenced to pretend to be unicorns, frogs, fairies, and trees. They we too cute, and were more than willing to "Take my turn acting. You girls are so good at it, and I am much better at guessing." After they left, Patrick and I video called Cameron. She was wound up tight as a drum. "Hey Momma! Hey Daddy!" was quickly followed by her singing her ABCs, Jesus Loves Me, and Mary had a Little Lamb (all without stopping for a breath). It is always so wonderful to see her. Modern technology is so great. It makes it a little easier to be away - a little.

I hadn't realized how much weight Patrick had lost until we woke up Sunday morning and he had lost his wedding ring. I noticed that it was a little loose when I put it back on him in the hospital. "Oh no, my ring is gone!" I was so worried we wouldn't find it. We had spent Saturday checking out of the hospital, getting something to eat, sitting on the deck, and doing other odds and ends. I was so relieved when I found it amongst the bed linens. After the excitement of the morning (and by morning I mean afternoon seeing that we didn't wake up until 11:45), we had wings for lunch and went to Wal-Mart to pick up a few things. Understandably so, Patrick's 100 or so staples draw a bit of unwelcome attention, so we got a few hats for him - a black pageboy and a Texas Longhorns baseball cap. I'm a big fan of the pageboy. He looks so handsome in it.

Monday I tried to get some work done. The Forget-Me-Not ball is quickly approaching, and there is SO much I need to do. I sent out a few emails, called some of my volunteers, and then said that Patrick needed me to help him do a few things. After dinner, Patrick and I sat outside again, and then we went upstairs to go to watch a movie. After the movie was over, Patrick got out of bed to brush his teeth. When he came back in he said "My eye is swelling." I took a look at his right eye, and sure enough he was right. My adrenaline went through the roof. I went downstairs, got him an ice pack, and watched his face. After about an hour the swelling hadn't gotten worse, so he went on to sleep. I continued to watch his face until 3:00am. We woke up Tuesday morning and both of his eyes were swollen, and I panicked a little. We called both of his doctors, but had to leave messages. After an hour or so, Dr. Kupferman's nurse called, talked with Patrick, and said that he thought the swelling stemmed from the fact that Patrick has been sleeping flat in the bed. They told Patrick that he is going to need to sleep sitting up for at least a few more weeks, if not a few months. Whew! We had planned to meet Michelle and Mike for dinner, but we decided to reschedule so that we could get Patrick's eye situation under control. We spent the rest of the day making sure that Patrick's head stayed elevated. I am really looking forward to having dinner with Michelle and Mike later in the week.

I was talking to a friend today, and she said "I know you are ready for things to get back to normal." Normal - that seems so long ago, but then I thought; what is normal? According to Webster:

normal |ˈnôrməl|

adjective

conforming to a standard; usual, typical, or expected

She was right, there is nothing normal about cancer. Surgery, long hospital stays, radiation, sickness, weakness, more surgery, more hospital stays - for our family this was far from the expected. However, we have had to learn ways to get aspects of our life to conform to the standard. This has become part of our normal. That may at first blush sound like a bad thing, but it keeps me on my toes. For example, one of the hardest things about being in Houston is being away from Cameron, but part of our present normal is using the webcam call to see her. It goes to show that we decide what is normal in our life. Sometimes that has meant incorporating unwelcome things into our usual, and other times it has meant that we make those unwelcome things conform to our standard. Yes, I am looking forward to when our normal is comparable to everyone else's idea of normal, but right now I will make the best of my normal. Our circumstances are different, but we have some things that have always been the standard, usual, typical and expected: we have so much love around us from friends, loved ones, and family; we have the drive to do whatever it takes even when the road is hard; we have the determination to beat this intruder; and we have each other. That is my normal.

She also said that she didn't know how Patrick and I could be so strong. I don't feel strong. As a matter of fact, sometimes I feel like I am doing good just to keep my head above water. So like the true geek that I am, once again turned to Webster:

strong |strô ng |

adjective

1 having the power to move heavy weights or perform other physically demanding tasks

2 able to withstand great force or pressure

We will move this heavy weight. We have withstood the pressure before, and we will continue to do so. Mahatman Gandhi wrote that "Strength does not come from physical capacity. It comes from an indomitable will." We will overcome this battle.

overcome |ˌōvərˈkəm|

verb

Defeat, beat, conquer, trounce, thrash, rout, vanquish, overwhelm, overpower, get the better of, triumph over, prevail over, win against, outdo, outclass, crush

Sounds about right to me.

The oasis of the heart

Today was a day of emotional whiplash. After our wake up call of doctors (which started at 6:45am! I almost threw my pillow at the neurosurgery fellow that showed up that early), we got the word from Dr. Kupferman that Patrick was ready to be discharged. One of the fellows came in and removed Patrick's drains, put in a few stitches where the drains had been, and gave us the all clear that we could leave Saturday. Dr. Levine said that Patrick was still at risk for a spinal fluid leak, but that if he was going to have one he would have it no matter where he was. Take it easy, no picking up anything heavy or doing anything that would cause him to strain. That causes pressure in your head, and that is what could be a problem. I was just a little short of giddy. Patrick seemed happy, but he is still in a good bit of pain, so the big smiles are left up to me. I asked Patrick what he wanted me to order for him for breakfast, and when he replied "Honey Nut Cheerios and milk" I felt like he was coming around to his old self. After we ate Patrick got up and walked around the Unit. He is still pretty weak from being in bed so long, but he made two laps before he gave out. He asked me to go find him a wheelchair so we could go on a stroll. I tracked one down in the lobby, brought it up to the 8th floor, picked Patrick up and we went to the first floor and then outside. Patrick was wearing his hospital gown, pajama pants, grey no-skid socks, and his prayer shawl. It was a very pretty day - a little cool but beautiful. We walked the length of the hospital and stopped beside a pretty landscaped area with benches. We sat there for a while and watched two shiny black birds. They were flying, squawking, and fighting. They would strut around each other between the red salvia and yellow marigolds and take turns fluffing up their feathers to show some unseen Ms. Black Bird who was the baddest bird on the block. They were very entertaining for a while, then flew away, and since our free show was over, we walked around some more. Patrick's head started to hurt, so we came back to the room, and he laid down for a little while. I sat down with all intensions of getting some work done, but the next thing I remember was my cell phone ringing in my jacket pocket. The first call was Rebecca. I told myself I would call her back, and before I could get my eyes closed good it rang again. I didn't even look to see who it was and turned it off.

I have learned why people that are receiving treatment in a hospital are called patients - you must have great deals of it to take care of said patients. Patrick's pain was causing him to be very short with me, and it had started wearing me thin. I was doing my best to encourage him and help him out, but I think he had developed what we refer to as "The Nat* Syndrome." We had a friend named Nat*, and there for a while it seemed that it was ALWAYS something. It got to the point where no matter what came out of her mouth it was irritating. I mean she could have said "Here is a golden goose carrying a $100 bill" and we would have told her where she, her goose and her money could go. It seemed like no matter what I said or did, it was the wrong thing. If I asked if needed help I was being a nag. If I asked him if he wanted something, I was bothering him. "Are you sure?" was the ultimate irritation. After feeling a little hurt, I told him that I was doing all I knew to do to be there for him, and that I didn't know what else to do. He could tell hat I was hurt, and after he got settled back into the bed, he slid all the way over and just patted the bed. I sat down and he pulled me close. There was the Patrick I knew.

I spent a little while looking at airline ticket prices for next week in hopes that we may be able to come back early. I was checking out Priceline for cheap tickets. Then we got a knock at the door. We got a second visit from Dr. Levine. He said he just wanted to stop by and double check on how Patrick was doing. He looked at the drain sites and said that Patrick looked great. He asked Patrick about his pain, and he told Dr. Levine that he thought that part of the pain he was having was because he has been grinding his teeth which is causing his TMJ to act up. He recommended we run out and get a mouth guard, and that should help some. I asked him some questions about restrictions for Patrick when he leaves, like when he could get his head wet, should he cover his head while it is healing and if so with what, and that sort of thing. He said that the pathology reports from the tissue they removed from Patrick's dura would be back soon. "As a matter of fact, let me go check and see if it is in the computer yet." He walked out of the room, and when he came back in he shut the door behind him. My heart stopped. "Well the labs are back, and what was on your dura was tumor. I know that isn't what we wanted to hear." We both looked like we had been kicked in the stomach. I can't really remember who asked or what exactly was said but the gist of the question was "What's next?" Dr. Levine said that we would need to see an oncologist in the Head & Neck center and then go from there. He said that surgically he has taken a very aggressive approach, and he encourage that we continue to do that. He said that if chemo is on the table, he would go for it. He said that Patrick has done so well because we have kept such a positive attitude, and we needed to keep that up.

After he left the room, I sat on the end of the bed and rubbed Patrick's leg. I told him that we would just take it one day at a time, and that we would get through this. We made it through last year, and we can do it again. I wanted to say something poignant that would bolster his spirits, but nothing came. I have heard "I wish I knew what to say or do." from many loved ones over the last two years, and I tell them "There isn't anything to say, but please do keep us in your prayers." I suppose I should tell myself that. "Erin, there is nothing to say to Patrick or yourself. Just pray." We went on another walk/wheel around the hospital, and when we got back to the room Patrick asked me if I would go ahead and go get his mouth guard. CVS is about a mile one way from the hospital. "You don't want to walk down there in the dark, so go ahead and go." I don't know if it was to get me out of the room so he could absorb the news alone, but I picked up my bag, gave him a kiss and hit the street. I called my mom and cried, called Becca and cried, called Leigh Ann, but she didn't pick up, called Krista and cried, called Michelle and cried. By the time I talked to Denise I was a hot mess, both literally and figuratively. Keep in mind that I am walking the streets of downtown Houston during all of this. When I was walking and talking with Denise, I walked past a cafe that had an outdoor seating area and sat down. Denise prayed with me over the phone, and I cried some more. I hadn't cried like that in a long time. While in the drug store I tried not to make eye contact with anyone. When I got to the check out counter I pretended to be on my phone so that the cashier wouldn't ask me "Honey, are you ok?" On the way back Lisa called. (Denise had called her to tell her the update on Patrick.) She said that as soon as Denise told her she thought of Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." My practical brain knows that when we are done with this mess our family will be stronger and closer. That we will have a powerful testimony. That hardships are the blessings that no man wants. Unfortunately my practical brain has taken a hiatus, and the brain that is left is freaking out.

By the time I got back to the hospital I had pulled myself together a little. I had stopped crying long enough that I could pass my red face off to being hot and not being hystercial. When I got up to the 8th floor I ducked into one of the bathrooms, looked in the mirror (yikes!), washed my face, and went back to Patrick's bedside. I ordered us something to eat. Eating was the last thing I wanted to do, but I knew Patrick had to eat and he wouldn't if I wasn't. I pushed some tuna salad around on my plate, and then I got in the bed with Patrick, and we watched a movie. Two grown people in a twin sized hospital bed is a tight squeeze, but that is just what I needed - a tight squeeze. We watched "Precious." (It is an incredible film. It is not one for the faint of heart. It is raw and in some places hard to watch. It deserved every sing award that it received and then some.)

After the movie we sat on the bed and listened to some music. I have had his wedding ring on a necklace since he went into surgery. I took it off of the chain and slipped it back on his finger. I have had to take it off more times than I would like, but every time I put it back on I think about our wedding and the vows we made. I, Erin, take you Patrick, to be my wedded husband, to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part. Six years ago when I said them I had no clue that we were destined to walk this path. I think about them I think of the affirmations that they hold. To have and to hold. Sometimes that is all we can do right now. For better for worse Ok right now it is worse. For richer for poorer. We are both blessed with jobs. In sickness and in health. We have this one down for sure. To love and to cherish. Him being sick makes me love and cherish every second with him and Miss Sassy Pants Cameron. From this day forward. It has been nearly 6 years since I said it the first time, and I said it to myself again tonight. Until death do us part. When we are both old and gray and pushing 100. Some people have entire ceremonies to have that experience. Mine was without a word on a hospital bed 1,000 miles from home. I was in a pair of jeans that need to be washed, my last clean shirt, and my hair in a pony tail that had been slept on. Patrick was the one wearing the gown this time. It was stained with blood from where they had removed his drains and accessorized with a silver line of staples, two stitches, an IV in his left arm and bandages on his right. Romantic - not really. Sacred - without a doubt. What is funny is that Patrick had no idea.

We have so many blessings. I am thankful every day for them. Patrick is young and strong. We have a loving supportive family. We have the most wonderful little girl ever born. Our friends are incredible. We are covered in love and prayers. We have faith. One of my favorite authors Kahil Gibran wrote that "faith is the oasis of the heart." While going through this journey there are two questions that are in a non-stop cycle - "Now what?" and "What's next?" Right now, I don't know the answer to either of these questions so I am going to rest in my oasis until I have some answers.