Wednesday, April 14, 2010

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|


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 |


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|


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.

Saturday, April 10, 2010

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.

Thursday, April 8, 2010

Silver Linings

It was a very long few days for Patrick. Tuesday was a pretty good day for us. Patrick had some air trapped between his skin and skull that was causing some problems, so one of the neurosurgeons came in and wrapped his head tightly with gauze. I am officially married to the sheik of Houston. Patrick's dad spent the whole day with us at the hospital. We watched a few movies, and Patrick rested well during the day. Mr. Bill stayed until about 9:30. He was going to have to leave his hotel at 7:30 Wednesday morning to make his plane, so this was the last time we saw him before he left. He prayed with us before he left, and I got a little teary eyed. I haven't cried the whole time I have been here. There have been a few wells of tears, but none of them have escaped. Patrick had just been doing so well. Tuesday night broke that pattern. By about 11:30pm is pain got ahead of his medications, and he was in pretty bad shape. It wasn't until about 3:30am until they were able to get it under control so he got virtually no sleep. He slept as much as he could on Wednesday, but he was still hurting in spite of the meds. His appetite had been up and down, but he did eat some lunch and dinner Wednesday. Thursday morning (like every morning) was filled with the doctors making their rounds first thing. Between 7:00 and 8:30 every morning we get a flurry of doctors, residents, and fellows coming in to check on Patrick. They have all said that he looks great. I agree, but he isn't' convinced. Thursday morning they removed his bandages to reveal his healing incision. Patrick's doctor said that there were between 75 - 100 staples in his scalp, so he looks like he is sporting a zipper. All the doctors said that it looks great, and knowing that it is healing well, I wanted to count the staples. Patrick was having none of that. Because of how bad he feels, he doesn't have very much patience and his since of humor is not quite what it normally is. Around mid-day Thursday his pain was doing better, but his pain medications were making him sick, so he felt bad in a different way. He was able to stand up and walk a little bit which is a big step (no pun intended). The good thing is that every step is a step closer to going home. If things go as planned, he should be discharged over the weekend, appointments next week, and then we can fly home. Patrick will have to come back after a few weeks for post-op evaluations. Depending on what the pathology results are from the abnormal tissue on the dura, chemotherapy may still be on the table. I am just praying that what looked abnormal is just scar tissue from last year's treatment.

If you ask Cameron "What's gonna work?" she will chime in with "TEAMWORK!!" No truer words have been spoken. While in the waiting room during Patrick's surgery, I met a young woman named Michelle. Her husband was having surgery to remove a brain tumor and we were sitting in the same section of the huge waiting area. She and I are about the same age, she has a little boy a few months younger than Cameron, and she had been totally blindsided by her husbands diagnosis (boy do I know that feeling). He was diagnosed in January of this year, and she and her family were just starting their journey with cancer. For those of you that have been following this blog, you know that I started it to put my story out there so that maybe I would be able to help someone that was in a similar situation. When Patrick was diagnosed last year, I couldn't find any resources for women "like me". I work in non-profit and know where to look for support programs, social networks, and the like. The few websites and message boards that I found for wives like me were either ill kept or outdated; so I stopped looking and started writing. We chatted off and on all day. Her husband's surgery was about 4 hours, and as they were leaving she told me where they were going to be - three doors down from Patrick in the ICU. The first few days after surgery were insane, but we managed to exchange a few text messages, and I found her on FaceBook. Her husband was discharged yesterday, and I invited her for coffee before they left. We went to the coffee shop in the lobby, got lattes, and sat and talked. It was so nice to be in the company of someone who I can identify with in such a unique way. I am truly looking forward to getting to know her. She and her husband live very near to Krista's, so before we leave town the four of us are going to get together for dinner. I cant wait, for two reasons. First they are both very interesting people and secondly that will mean Patrick is out of the hospital! That is a win win!

"Every dark cloud has a sliver lining." When taking care of your family when one member has cancer, there are many dark clouds. Having to be 1,000 miles away from home for treatment - dark cloud. Seeing Patrick in pain - dark cloud. Missing Cameron so much my heart physically aches - dark cloud. Trying to get work done by Patrick's bedside while being distracted by nurses coming in and out; monitors beeping; and people in the halls, some laughing, some crying - dark cloud. Felling helpless - dark cloud. In some of these clouds I can quickly identify the silver lining. We are so blessed that we have been able to come all the way Houston for treatment - silver lining. The best hands and minds in cancer treatment are here at MD Anderson - silver lining. I have a job that supports me to allow me to work from the hospital if I can, and if not they understand - sterling silver. Some of the other clouds I'll have to search for their lining. How can someone in so much pain hold a silver lining? Feeling helpless…what could be sliver about that? Your guess is as good as mine. I miss Cameron so much; I can't imagine that there is a silver lining there.

I am sure that will change when I see her when I get home. She is my smiling shining beautiful sliver lining.

Feeling a little less helpless already...

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.

Friday, April 2, 2010

A stranger in a strange land.

Walking back in MD Anderson today was just as hard as I thought it would be. As soon as we cleared the threshold from the parking garage I got a huge lump in my throat and a knot in my stomach.

We arrived at the hospital at around 9:00am, and stopped at the coffee shop in the "The Aquarium." The Aquarium is the what they call the main lobby, and it is filled with beautiful fishtanks, comfy chairs, tables, and a few recliners. There are always children. Unless children are patients, there are a number of places in the hospital that they are not allowed. Cameron and I spent lots of time when she was here watching the gold, silver, sunshine yellow and bright blue fish school around the plants. I ordered a small Mayan Mocha, a cheese danish, and water. While we were sitting and drinking our coffee, one of Patrick's radiation nurses walks by. "Hey! How are you? It's so good to see you." she says with a smile. Patrick tells her that unfortunately he is back because the cancer is back, and her face changed like a light switch. "Oh no. I am so sorry." They chatted a while, and then we made our way upstairs for Patrick's meeting with his neurosurgeon, Dr. Levine.

We waited a little while in a room filled to the gills with patients, and then we were called back to a consultation room. In it was a small round table, four chairs, a computer, and a large white board. A tech came in and asked Patrick a few generic questions, took his temperature, and blood pressure. Amazingly we only had to wait about 10 minutes, and Dr. Lavine and a student come into the room. He told us hello, and it struck me that he didn't say "It is good to see you." He asked "How are you?" His omission of the all time cookie cutter greeting screamed truth. It isn't good to see him. It is the exact opposite of good to see him - it is a nightmare. He began to talk about Patrick's surgery and what his plan is. They are going to blitzkrieg his sinus and the base of his skull. Cut him ear to ear not only to have access to his entire sinus, but they will also graft soft tissue from his head to use as patch material. They will take out virtually all of the bone at the base of his skull and part of the dura (the sack the covers the brain). Pretty much all of his sinus tissue will be removed and they will use the tissue they harvest from his scalp to repair the dura and other tissues they remove. As soon as they said "dura" my heart sank. That is as close to the brain as you can get before hitting white matter. He got up and showed us where he planned on making the incisions, the bones they would remove, and how he would put it all back together. He said they may also have to cut along the side of his nose to get even deeper access, but they wouldn't be sure of that until they had him in the OR. He inundated us with possible risks: headaches, spinal fluid leaks, vision problems like double vision or even blindness, bleeding, blood clots, stroke, coma, seizures, and death. I know that in order to sign an informed consent they are required to tell you all of those things, and the risks are hard to hear no matter how slim the chances. He said that this may be the end of the battle, or the cancer may come back. There was really no way to tell definitively. It did come back quickly inspire of the radiation, so they were going to removed everything and take huge margins. He did say that in hindsight he would have still done the surgery the same way before. It came back, and this is a whole new ball game. Patrick asked how long the surgery would take and he would be out of work. Dr. Levine said that they had scheduled it for 10 hours, but it may not take quite that long. He said that some people stay out a few weeks, but others go back to work sooner so they have distraction. He said that Patrick did need to be very informed about his ST & LT disability insurance programs just to be sure that we know what our financial situation was. He mentioned that we needed to be sure to plan way ahead - just in case he does have to go on LTD. He asked if I had questions, so I asked why the cancer didn't really show up on Patrick's scans. He said that after surgery and radiation, tissue is very different, and sometimes things are not very clear on MRIs and CT scans. He reassured me that if the cancer had metastasized somewhere else it would have showed up. That made me feel some better. I didn't really know what else to ask. I am sure when I get in the bed tonight I'll come up with a million. I'll be sure to write them down and have them ready for Monday.

After that appointment we went outside and sat on a park bench in front of the building. There were purple iriss in bloom in front of bright pink azaleas. The breeze was blowing and the sun was out - beautiful. We just sat down, and it reminded me of the afternoon we spent in the yard. We didn't really talk, we just sat together and enjoyed the sunshine before his next appointment.

Next we met with Dr. Kupferman. Dr. Kupferman is Patrick's Head and Neck surgeon. I thought that he was the lead surgeon on Patrick's case, but Dr. Lavine his neurosurgeon is going to be in charge this time. The meeting with Dr. K was pretty short. He talked about his role in the surgery as a support person for Dr. Levine, and that he would be doing some of the reconstruction. He said talked in a little more detail the risks involved with the incision on the side of his nose. He said that the scars from both the scalp incision and the one by his nose would heal very well, and that they would more than likely not be very noticeable at all, which I think made Patrick feel a little better. We signed more consent forms, and they asked if he had blood banked for him for his surgery. We didn't even know that was an option. I of course ask if I could go give blood right then, and have it for him just in case. (We don't have the same blood type. Patrick is A+ and I am O+, but O is the universal donor, I was ready for the needle) They told me that even if I gave blood right then, it wouldn't be processed and ready by Monday. I used to give blood regularly, but I haven't in a long time. I decided not to give after my seizures got under such good control. I figured I wouldn't rock the boat. There were more forms, and we were off to anesthesia consult.

Just like last year, anesthesia was packed and loud. We hadn't waited more than 15 or 20 min. all day - until then. After about 45 min of waiting, we were taken back and met with the anesthesiologist. He asked Patrick some generic questions about drug allergies and that type of thing. They gave us the short rundown of possible complications on anesthesia, and that was it. The day at the hospital was done. We stopped for a quick bite to eat, and then we went back to Krista's for a nap. Before bed we even got to video call home and talk to Cameron. It was so wonderful to see her. She sang us Jesus Loves Me, and she told us the recipe for grape drink - "sugar, purple, and water." It has only been a few days, but I miss her so much. Patrick does too.

MD Anderson Cancer Center is like an enormous melting pot. There are people like Patrick that don't look sick at all, and then there are those that look as weak as water. There children with shiny little heads running laughing and playing around the fishtanks in the lobby; and there are women wearing colorful headscarves. Today there was a particular man that caught my eye. He had deeply sunken eyes, slightly jaundiced skin, and he shuffled more than walked. He escorted his IV stand which hung heavy with bags of fluids through the busy lobby. He was tall and thin, and his hair was patchy at best. Don't ask me why, but he reminded me of the apple tree in my mother's yard. When I was 7 years old Hurricane Hugo nearly pulled the tree out of the ground. It lost a number of branches, and it still leans to the left, but after a few years of healing, it started bearing fruit and has for 20 years. This man was that apple tree. His branches were weak from the storm he was battling. His bark was tattered, and his leaves had long since let go, but he was still standing. I am sure it may be a while before he is able to bloom and bear fruit, but he is still standing. I only saw him for a few moments, and we never even made eye contact, but he will stay with me.

The old, the young, the weak, the strong … all in the battle of and for their lives. In spite of the many weeks I spent roaming this building last year, I still feel like a stranger in a strange land.

The Plan

As I write this I am sitting at the foot of the guest bed at one of my dearest friend Krista's house in a very comfy chair with my feet propped up on my suitcase. Since New York things haven't slowed down for a second.

I didn't get a real update on "the Plan" until Monday (March 22nd). I got to work Monday with only a million things to do. I jump in head first and before I know it, I looked at the clock and it was 4:30. Time flies when your having fun (or when you are eyeballs deep after only two days out of the office). I picked up Cameron from school, and I just wanted to squeeze her to death! She was playing with her best friend Alyssa, and she didn't see me standing at the door. I didn't say a word and just watched them play. Then she caught my eye and she yells "Momma!" and runs across the room toward me. She is so amazing for me. That two year old 22 lb. stink bug can make my day wonderful, no matter what the circumstances are. What a little life changer. I loved my life of before Cameron, but now I cant imagine life without her.

As I pull into my driveway I can hear my leather sofa calling to me, but I managed to keep myself away from that chocolate oasis of laziness, and I hit the kitchen. I didn't even take the time to change out of my work clothes. I put on an apron, pulled back my hair into a loose bun, and I started dinner. I highly recommend cooking dinner in nice work clothes with a pretty apron. It makes me feel like what I envisioned my grandmother when she was a young woman in the late 50s. I can see her cooking dinner for the family in classic pumps, a lovely spring dress, and a sunshine yellow handmade apron detailed with eyelet lace. My apron was ordered online, and my dress is from Ross, but I still feel lovely. Sometimes you have to fake it until you make it. Patrick got home, and I had dinner mostly ready. He came in the kitchen and laughed at me a little for wearing an apron. I just smiled and turned back to the corn, and he came up behind me and kissed me on the neck. "Thank you for cooking dinner." It was so sweet and genuine that I got a little choked up. "Anytime honey."

Over oven fried chicken, corn, green beans a crescent rolls he filled me in on all of the details from his trip. The MRIs and other scans didn't show the cancer, but when they scoped up his nose they could see it. It was very small, but they wanted to get it out as soon as possible to make sure that it doesn't spread. The results are a double edged sword for me. I am so thrilled that it is so small that the scans are not even able to see them, but the flip side to that is well what if there are other places that have small tumors that the scans aren't picking up? The "What if" game can drive you crazy, so one thing that I have gotten a lot better at since the first time I heard "I have cancer" is trying to go on only the information I have in hand, and not the plethora of information on Google. Nope. Not going there. Patrick's doctors decided against chemotherapy which was a huge relief for me. I am willing to do whatever has to be done to remove this intruder from our life, but I am so glad that Patrick isn't going to have to deal with months and months of from that nightmare. The bad news is that they are not going to be able to do Patrick's surgery endoscopicly through his nostrils like they did last time. Irradiated tissue behaves much differently than normal tissue, and it is at more risk for bleeding and it doesn't always heal well. Due to that, they are going to have to do the surgery cranio-facially. They will pretty much cut him ear to ear along his "hairline," pull down the skin on the front part of his face, cut through the bones in his forehead, and work from there. The tumor is almost dead center of his face about middle way back in his sinus. Now I love watching medical shows on TV. I can watch a show where they are performing open heart surgery and eat spaghetti at the same time. That being said, take my advice; don't Google cranio-facial surgery. I know that is like saying "Don't think about red." So when you click open a new window to look it up, be forewarned. It is VERY invasive. Anytime a procedures description includes "peel down the skin of the face" my entire body shudders. Amazingly they said that the recovery time isn't long. One week in the hospital and then a second week in Houston for follow ups. Then the very shocking news. "They may do the surgery as early as Monday [the 29]." WHAT? I'm not really sure why, but I was shocked to hear that date. I think it mostly stemmed from the fact that I had been out of work for 2 days, and that would leave 4 work days to get ready for 2 weeks more weeks of being out. Very selfish I know. We hadn't gotten the taxes done, I would have to prepare the house for Momma to come take care of Cameron, and ….. well lots of things. Even with my super ninja Momma skills, that would be pretty hard to pull off. Patrick was a little concered about it being so soon, but I put my brain into "you have 4 days sister" mode. I work like a dog until Thursday when MD Anderson called, and they decided to schedule Patrick's surgery for the following Monday (April 5th).

I worked hard on getting things lined up, Patrick did the taxes and we bought plane tickets for us and Patrick's dad. Mr. Bill (and Patrick's uncle) drove out to TX last year when Patrick had his first surgery. I didn't think that anyone was going to be able to come, and I thought I was ready to do it alone. I was wrong. Patrick was in surgery for 8 hours last year, and the waiting was excruciating. Mr. Bill was right there. He helped me roll Patrick from side to side and massage his back when Patrick was having horrible back spasms. We prayed together, cried together, and laughed together. If not for him, I don't know that I would have been able to hold my head up. I will never be able to express to him how much it meant to me that he was there with me. He is a wonderful man. I am so glad he is going to be with me again this time.

Baby sitter, check. Meeting at works covered, check. Laundry, check. I even packed my Snuggie. Yes I said it, Snuggie. I was the first person in line to make fun of the Snuggie. I mean it is a bathrobe worn backwards. Only in America can people make millions on a big piece of fleece with arms. What a crock! Then I got one for Christmas, and I love it. It is everything it says it is. Warm, snugglely, and you can work on your computer without leaving anything uncovered. MD Anderson has to be one of the coldest places I have ever been. Last year when Patrick was in the ICU, it was so cold that even under 5 hospital blankets I thought I was going to freeze to death. My suitcase looks like I am going to Antarctica and not Texas.

Logistically we were ready, but getting ready emotionally is going to much more challenging. Let's hope those ninja skills stay strong.