Friday, August 27, 2010

Love remains

Patrick’s eye strain headaches have gotten progressively worse over the last few weeks, so his doctors set him up to have a MRI. He went to his oncologist in Columbia to get the results, and they were very concerned. They saw something behind his eye. Dr. Smith felt that it was likely tumor, but that it could also be scar tissue from his meningitis. He wanted us to go to Houston and have his doctor’s at MD Anderson look at it. We started making the appointments set up, but took us two weeks to get things set up. His head and neck surgeon had been on vacation, and in spite of Patrick sending emails for over a week, they hadn’t gotten him an appointment. I called Patrick at work, and asked if he had heard back about his appointment. Patrick had been super busy at work, and he cut me off pretty abruptly and said “I haven’t heard back, and I don’t have time to deal with it today. I am super swamped here at work.” to which I replied “I’ll handle it.” I looked up the toll-free number for the Head and Neck Center, and hit “0” until I got a human on the phone. The woman that answered said “Let me transfer you to his scheduler.” I stopped her quickly and said “No thank you. My husband has been emailing her for a week, and I am not going to leave her any more messages. Go get her.” I held and held and held, and finally a woman answered the phone. I told her that Patrick needed an appointment for the 26th. She said “Well Dr. Kupferman has been out of town and he doesn’t have anything available that day. The 26th is his first day back in two weeks” to which I replied “Look, we are not coming across town here. We have 1,000 trip, a two year old, and we both work full time. He only has clinic on Thursday, so WORK US IN!” “Well mam, I am sorry.” I lowered my voice and said “If you can’t help me, then put someone on the phone who can. There is reason in all things, and this is crazy.” “Please hold.” I waited some more and the next thing I heard was “How is 11:00?” I smiled with satisfaction of my cross country smack-down. I worked very hard on trying to get a donated plane ticket for Patrick (sadly it didn’t work out), but we got everything lined up for him to come out. I had not planned on coming out with him to start with. I have missed so much work in the short time I have been at my job, and I expected this trip to be a fly in and fly out kind of a thing. I would have never expected what was about to come.

Patrick was to fly out on Tuesday, and as I was helping him get his things together, he said that he really wished I could be there with him. “I don’t know what I am going to do if they give me bad news.” I had this huge wave of “Oh my gosh! I am such a horrible person. How could I even think to not go out there with him? What if he gets bad news?” I asked him if he wanted me to come. “You don’t have a ticket or anything, and you haven’t gotten things arranged to come out.” I said “That isn’t what I asked you. Do you want me to come?” He got a little choked up, and said that he did. On the way to work, I called my mom and asked her if she would drive out to Houston with me. I didn’t even look at plane tickets. She said she would do whatever I needed her to. I got to the office and tore in like a tornado getting things ready to be out for a few days. I got a call from Patrick that he couldn’t get his plane ticket information to print at home, so I printed it and ran home for “lunch.” I told him my plan to drive out there. He said “My appointments start on Thursday. You can’t get out there by then if you drive.” “Oh yea of little faith. It is 18 hours, and that would put me there before your first appointment. It will be hard driving that much in one day, but I’m going to do it.” He gave in. You would think after being together for nearly 10 years he would know better than to think I can be talked out of something. “You said you needed me there, and that is where I will be.”

My step-dad got word that I was going to drive out there, and he called me choking back tears. “Honey, please let me buy you a plane ticket. I will be worried sick if you drive out there, and this is one thing that I can do for you. I want to help, and right now this is the only way I know how. If you really want to drive out there, I’ll support you. I don’t want to make things more stressful, but I would really love to get your ticket. If you want your mom to go out there with you, I’ll buy her one too.” I told him I would rather Mom stay home with Cameron, and I had made that trip before alone. Before I agreed, I looked online and found a reasonably priced ticket, took Mr. Larry up on his offer, and started packing.

The flight to Texas on Wednesday was a all day affair. I had to be at the Florence airport by 4:30am, then 3 hour lay over in Charlotte, and then 2 more in New Orleans not counting air time. I got to the airport, picked up a rental (which is school bus yellow), and drove to the hotel. Patrick was in bed when I got there with a heating pad on his eye. He has headaches non stop, and the warmth seems to help. I crawled into the cloud of a king sized bed and spent most of the rest of the day snoozing. His first appointment was at 7:15am on Thursday, and his last one wasn’t over until nearly midnight (He had an MRI that didn't even start until 10:00). I knew that we were in for a long day.

His blood work started at 7:15. They drew it up, and we went and got coffee. We sat around and waited to meet with Dr. Kim who is a chemo specialist. He said that he would be working with Patrick’s team to decide what the best thing would be “if” what looked abnormal was in fact cancer. It was a pretty uneventful meeting, and we were off to more waiting for his appointment with Dr. Kupferman.

He confirmed my darkest fear. What they saw was indeed tumor, and he didn’t know if it was operable. He said that because of the location, Dr. Levine (Patrick’s neurosurgeon) would be the person who would need to make the real decisions from this point. He did say “Don’t give up hope.” That is not something you want to hear from a world renowned doctor. I ran to the store and grabbed a few things while Patrick rested. We watched a little Law and Order, and napped until we had to head back to the hospital for his MRI. We got done around midnight, came back to the hotel and crashed.

Friday is a day that will live in infamy in my heart. At 8:30 he had his appointment with Dr. Levine. He is a great guy, and he and his wife recently had a baby. He and Patrick are about the same age, and we have both connected well with him. When we sat down in the exam room, Patrick sat in one chair over on one wall, and I sat catty cornered to him. When Dr. Levine came in he said that “I don’t know how to tell you this. Patrick, why don’t you come over here and sit by Erin. This is going to be hard to say, and I think I might cry. You all are my peers, and this breaks my heart.” I got a wash of hot fear over me, and he said, “Your cancer has come back, and it is very aggressive. Let me show you the last few sets of films.” He pulled up the last three MRIs Patrick has had. The post operative scan (which keep in mind was only a few months ago) looked fine. The one he had when he had meningitis had a small shadow, but nothing that just jumped off the page. The scan from about 5 weeks ago showed some brightness behind his eye, but again nothing crazy. Then there was the MRI he had had the night before. There were three distinct masses. One on either side of his brain and one behind his eye. There was also some abnormal blurs in between the two hemispheres of his brain. “Surgically there is nothing that we can do, and chemo is not very effective in this location and with this tumor type. I want you to talk with some other doctors, but I am just so sorry. I don’t know how to say this, but six months from now, nine months from now...I just don’t know.”

My ears started ringing, and my lip began to tremble. The tremble turned into a quake and then an eruption of tears. I feel over onto Patrick’s chest and wept. Dr. Lavine and Roxanne (I don’t know her last name which is a shame. She has been on Patrick’s team since the beginning, but every time I hear her name I just cant help but sing, and her last name gets lost in song) both began to cry, and then there was a deafening silence in the room. “I want you to talk with a few more people, but as hard as this is to say, you will need to try and think practically too. You need to make sure your will is up to date, you know where life insurance policies are ....” I didn’t hear much more after that. All I could hear was my heart pounding in my ears. I just looked down at my hand in Patrick’s and cried. We left the exam room, and I don’t really remember walking to the car. Patrick asked me if I could drive. I pulled it together long enough to get us the 2 miles back to the hotel. We came upstairs and Patrick took some pain meds. I asked him if he needed anything. and he said "No." I quietly said, “I need to get some air. Are you going to be ok here alone.” He assured me he would be, and so I went downstairs by the outdoor pool. There wasn’t anyone there, and part of me was temped to strip down and get in. Part of me felt that the cool blue water might wash away some of the pain in my heart. I resisted the urge, and sat by the pool and wept. Rage, fear, helplessness, and loneliness poured out of my face in huge rivers. My heart was breaking, and it was nearly audible. All I could think of was Cameron. I could see her just as clear as if she was standing right there. I could see her the morning before we left putting a Dora band aid on Patrick’s head and saying “Feel better?” I could hear her “Read Daddy READ!” Patrick is a good man, and a great husband, but Patrick is a wonderful father, and those are so hard to come by.

We are going to be meeting with some other doctors before we come home, and I hope beyond hope that they will give us a plan. We are fighters, and we are willing to do whatever it takes.

When we got back to the hotel we made some very hard phone calls. We would have both much preferred to tell our families this in person, but we don’t know how much longer we will be out here, and we wanted them to be able to start praying. It wasn’t until then that Patrick truly let go. He called his Mom and Dad and all four of us cried. No matter if you are 6 or 36 or 106, you will always be your momma’s baby. Patrick called his brother and a few friends, and I called my family. Everyone said the same thing. “Oh my God honey I am so sorry. I wish there was something I could do.” There is...pray.

I never dreamed that I would be at this place, much less at 28. The place where I am even having to contemplate my husband dying. Being a single mother and widow and not even 30. I feel lost and afraid. I don’t feel hopeless, but I feel completely helpless. Now is the time to hold on to my little family with love and strength. That is what I am going to do.

I read this and it gave me some comfort.

1 Corinthians 13:13 And now these three remain: faith, hope and love, but the greatest of these is love.

As I sit in this hotel room looking at Patrick asleep in the bed, those are the three things that remain. Those are the three things that I am trying to fill myself with. Those are the three things I am and will hold on to for dear life, and no matter what, those three things will remain. I’m holding onto to the faith that miracles happen, and we will pray constantly for one. I am holding on to the hope that next week will bring us a plan that will turn our situation around. And it is true, the greatest of these is love. Love remains. If the worst does come to worse, his love remains. She remains with big girl panties and Dora band aids.

Monday, August 9, 2010

What a wreck

I wish that my lack of writing was due to me spending so much time frolicking through fields of daises surrounded by rainbows and lollipops that sitting down to write would be sacrilegious. Unfortunately my lack of writing is a reminder that free time is something that doesn't exist for me when I'm home. I hope that that doesn't sound like a complaint. I would work 18 hour days for the rest of my life with a skip in my step if that meant staying out of the hospital, but it doesn't leave for very much "me" time.

Our first few weeks home from Houston were extremely regimented. I am so thankful that my mom was able to stay for a while to help me get things lined up. One of my huge worries was Patrick's PICC line. Even more than infection, I was extremely worried that Cameron would pull it out. It was purple and dangly and went from his arm directly into his heart. I mean purple AND dangly? Talk about toddler bait! As soon as we got home, I sat her down and talked with her about what we were going to have to do to take care of Daddy. I was very serious about it, but I didn't raise my voice. "This is Daddy's PICC line, and it is so I can give Daddy his medicine. It is VERY important not to touch it. If you do it could hurt him, so never touch it. Only Momma can touch Daddy's line. Ok?" The response I got was not at all what I expected. She looked at me and started crying hysterically. "Don't cry baby! It's ok! You are going to be my helper. How does that sound?" She stopped crying, and perked up at the idea of being Daddy's nurse. I am so proud of her. She has been such a trooper through this whole process. Patrick wanted Cameron to sleep in the bed with us when we got home. I was not super keen to the idea, but as with many things in our life now, I took his lead. I don't think I have slept so lightly since Cameron was an infant. Every time anyone rolled over, stretched or even drew a deep breath, I woke up and checked to be sure Patrick's line was safe and sound. Once we got home he still had 2 weeks of IV antibiotics as well as an additional 3 weeks of oral antibiotics. My day started at 5:30 to get things lined up for his 6:00 infusion. Then at 6:30 I would unhook him, and at 7:00 he was due his second antibiotic. 6:00am, 7:00am, 2:00pm, 7:00pm, and 10:00pm were his infusion start times. That time line will be stuck in my head forever. On Saturday of the first full week home, I gave him the wrong antibiotic at the wrong time. His home health care nurse said that it wasn't a huge deal, but not something that I should let happen more than once. I'm a list maker, so I took a few dry erase marker and color coded his different meds, and made a timeline of the day on the bathroom mirror. We had a home health care nurse that came out on the weekends to check his line and change his dressing. Even though I had taken all the classes and knew how to care for his PICC it was nice to have a nurse to come in and take a look at it.

They took his line out on July 5th. That morning Patrick suggested that after we left his appointment, we should go to the zoo. I was concerned that he wouldn't be physically able to take a trip to the zoo, but again, I took his lead. While Patrick, Cameron and I sat in the exam room, Patrick said "I don't know if Cameron should be in here for this." Just as soon as he said that Dr. Smith and his PA Nicole came in. They took a look at Patrick's arm. They both said that it looked great, and that taking out the line wouldn't hurt. They snipped out his stitches and pulled out his line like a string. It was pretty shocking how long it was, and Patrick didn't even flinch. Cameron was to busy playing with her purple latex gloves to pay much attention. From Dr. Smith's office we headed off to the zoo. We had a wonderful time. I dropped Patrick off at the door, and I had planned on him getting a wheelchair. I parked and got Cameron out of the car. She put on her monkey backpack/baby leash, and she was ready to see a real live monkey. When we got into the gate, Patrick decided that he wanted to try and walk around for awhile rather than get a wheelchair. We spent the next three hours or so looking at lions, tigers, and bears. They have a great new kangaroo habitat that you can walk through, and the wallabies and kangaroos are within arms reach. We fed the goats (which is my FAVORITE part of the zoo), and Cameron and I both squealed with delight.

The rest of the week was pretty uneventful. Uneventful is my favorite type of week. Then came Saturday. I remember one of my high school teachers saying that 4 day work weeks always seem extra long. I will agree. I had to travel out of town for work, and after being out during Patrick's bout of meningitis, I still had MUCH work to catch up on. In the famous words of my dad, I had been as busy as a one legged man in an @$$ kicking contest. Saturday was a much awaited day for me. I had every intention on sleeping late, making a peach cobbler with the fresh peaches Mr. Luther had gotten us, and laying around like a lizard in the sun. I got up around 10:00 to the sound of Cameron singing "What's gonna work? Teamwork!" I crawl out of bed and head into the living room. Patrick was on the couch working on his computer, and Cameron was glued to the TV singing right along with Lenny, Tuck, and Ming Ming of the Wonder Pets. He had a funny look on his face, and I asked him if he was feeling ok. He said that his ear was ringing. He looked up online that it might be a side effect of his antibiotic, but he still seemed pretty concerned. I asked him what he wanted to do, and he said that he want to just wait and see for a while. I went into the kitchen and started washing and pealing peaches. Patrick had a little vertigo, and was a little queazy. We called Nicole, and she suggested he take an antihistamine because he may have some fluid on his ear. She said if it got worse to call her back. Of course we didn't have any, so I head to Rite Aid for some Claritin. Before I can even check out, Patrick called me and said that his vertigo that was so bad he could hardly stand up, he had gone deaf in his left ear, and started throwing up like crazy. I didn't even check out. I dropped the box on the counter and ran out and to the car. I starting calling my neighbors who I thought could come get Cameron, and couldn't get anyone on the phone. I got my friend Denise on the phone, and the conversation went something like this: *ring ring* "Hello girl" "Denise, how fast can you be at my house?" "Fast enough to pick up my keys. What's wrong?" "I have to take Patrick to the ER, and I need you to get Cam." "I'll be there in 10."

I run around the house like crazy packing up Patrick's meds (always take the bottles to the ER with you. It makes things much easier especially when you are on as many meeds as he is.), getting Cameron dressed, putting a diaper bag together, and getting her car seat out of my car. All the while I am answering the calls of "Momma, whatcha doing?" and "Momma, what's wrong?" and making sure Patrick has something to throw up in. Denise rolled in the driveway and I quickly installed the car seat, made Cameron kiss Patrick bye, and tried to get her excited about spending the day with Emily and Aunt Denise. She seemed very jazzed until she realized that I wasn't going to go with her, and then she cried - a lot. It broke my heart but I knew that she was in good hands.

We got to the ER about noon, and they ran a ton of tests that didn't tell them or us much of anything. The general consensus was that it could be one of a list of about 15 things, and that time would tell. His blood work didn't show any elevation in white blood cell counts. Between that and the fact that he had been on nuclear strength antibiotics for nearly 2 months, they were pretty sure that it wasn't anything bacterial. They gave him steroids and anti-nausea meds. They called in for a neuro consult and got on the phone with MD Anderson. They decided to admit him, and we spent the next week in Palmetto Baptist. Us being in the hospital this close to home was a very strange experience. Cameron stayed with Becca for a few days, and had a slumber party with Grandma Barbara. I was absolutely overwhelmed with guilt everytime I left the hospital. I had to go to work, and I had TV interviews on Tuesday and Wednesday of that week, so I had to spend the night at home. Live TV waits for no man, and there is only so much primping you can do in a hospital bathroom sink. When I came home Monday night the house was so quite. I walked into the kitchen and saw the remnants of my cobbler. The sink still had peach peelings in it, and the knife that I had been cutting with was still sticking out of half a peach, the handle sticky with dried juice. I fed the dogs, and headed to our room. I laid down in the bed and the silence in the house was deafening. It felt like being in church when there is nobody else there. I tossed and turned all night. I was terrified I would oversleep and I felt like I had abandoned Patrick by sleeping at home without him. My interviews went really well both Tuesday and Wednesday. Patrick was making some improvements, but they were slow coming. He was discharged on Friday. His vertigo was tolerable, but not so much better that he could drive. His nausea had passed, but he still couldn't hear out of his left ear. We woke up Saturday, and I made a second attempt at a cobbler. Blueberry this time. I made it with extra love (my mom said that was what made things taste better), and love is delicious! Patrick ate a small plate full, but unfortunately it didn't stay down. He spent most of the weekend on the couch, which was a good place for him. He lined up with a coworker of his to carpool to work.

Things seemed to simmer down over the weekend. The week of the 19th was going to be a very busy week for me at work, and I spent Monday getting things lined up for an event that I was holding in Greenwood that Thursday. Tuesday morning started out wonderfully. Cameron was in rare form. She sang to me all morning, and told me all about what she wanted to to at school. She went on to tell me that birds lived in trees and liked to fly. I asked her what else lived in trees and she busted out with "Pterodactyls do, and they fly too." I laughed until I nearly cried. I mean what 2 year old spends her morning talking about the habitat of prehistoric creatures. I got everything loaded in the car, and she told me that she wanted to drive. I laughed, told her to give me at least 15 more years before she started nagging me for the car keys, and that she needed to buckle up in her car seat. "I don't want to buckle up." I told her she had to because her car seat would keep her safe. I cranked up the car and cranked up some music. Cameron and I sang dinosaur songs all the way to school. Well almost all the way to school.

I was turning left onto Arrowood road right behind Dutch Square mall, less than a mile from Cam's school, and we were hit nearly head on by a Lexus SUV. There is a hill at that light, and long story short the speeding Lexus came tearing over the hill and into our front seat. The impact was so hard that it spun our car several times in the intersection and we need up across the street on the sidewalk pointing the opposite direction of which we had been going. The crash was unbelievable. Cameron was hysterical in the backseat, and I could hear myself saying "Oh my God. Oh my God. Cameron, It's ok honey. We are going to be fine. Oh my God." The windshield was shattered, and my face and chest were on fire. When the car finally came to a stop, I pushed the airbags off of me and slung the drivers door open. It didn't occur to me to look and see where we were or if there was traffic. Well after the fact I had this horrible image of my throwing the car door open, and it getting snatched off by another passing car. Fortunately the sidewalk was where we landed. I had to get Cameron out of the car. I jumped into the backseat, and the look on her little face was heartbreaking. She was full of shear terror. I checked her back and neck before pulling her out of her seat. She grabbed onto me like a little spider monkey. She was crying and I was doing my best to comfort her. I turned around and there was a woman standing there asking me if I was ok. "I don't know." She said "Let me hold your baby." After some coaxing, Cameron went to her, and it wasn't until then I realized that I couldn't stand up straight. I leaned back against my car and just slid down. The car was smoking and some other people who had stopped to help had to pick me up and cary me away from the car. I looked down and saw that my chest was burned from the airbag and there was blood on my dress. Every move hurt, and in spite of my attempts, I couldn't help but cry. Cameron sat beside me and at one point she patted my leg and said "Don't cry Momma. It'll be alright." I called Patrick, my sisters, and one of my coworkers. I am sure that what I said was a huge garbled mess, but next thing I knew my coworker Adelle was there. The EMS team checked Cameron out, and they said that she needed to be checked out at the hospital, but that her grandmother could bring her. We just nodded and went with it because we didn't want to have to deal with the ER showing out because Adelle wasn't family. The slap on a c-spine collar and strap me down to a gurney and whisk me off to the ER.

The person in the SUV and I were on the same ambulance, and I kept saying "I'm so sorry. I didn't see you! I didn't see you!" He seemed very irritated and cold hearted. Maybe it was guilt for plowing his earth destroying tank into our car. Then I said "I don't have time for this!" over and over. I am convinced that the EMT thought that I had a closed head injury. "Ms. Stone you have been in an accident and on the way to the hospital." I shouted, "I KNOW THAT! I don't have time for this. My husband is getting over cancer treatment and I am trying to potty train a two year old!" After that Mr. SUV seemed a little more sympathetic. "It's OK miss. Accidents happen."

I get to the ER and they run lots of tests - X-rays on my feet (the gas and brake pedals beat my feet up big time. A torn tendon in one and a huge hematoma in the other) and hips (my hips got serious rope burns from the seatbelt, and they hurt like crazy), ultrasounded my lungs and abdomen to check for bleeding, blood work, and lots more. I kept asking how Cameron was doing, and the nurses told me that she was fine. We have been working on potty training Cam, and it was only these second day that she has worn her "big girl panties" to school, and she told everyone that came in the room, "I have on my big girl panties." I laughed and thought, both literally and figuratively, yes you do. When I get super stressed, I seem to get pretty funny, and I was giving the doctors a real hard time. I had a student that was in his first year of residency, and his supervising doctor was observing him ultrasound my lungs. Now I was in a hospital gown and my underthings. He took the wand and was rubbing it on my back, and then on the side of my ribcage. He started to lift the side of my bra strap so he could get a shot between my ribs, and I stopped him cold. "Wait just one minute!" He stopped and asked if he was hurting me. "No sir. You best not try and get fresh. I am a married woman!" His supervisor was cracking up, but he has this terrified look in his eyes. I heckled him for a while, and after the fear passed, he had a good sense of humor about it. His supervisor said that if I ever needed to come to the ER to please come to Richland. He said he could use more patients like me. After a while they brought Cameron into my room and she climbed in the bed with me. The doctors gave me some meds for pain, ointment for the burns on my chest and face, and wrapped my feet in ace wraps. Cameron came out with a few bruises, but nothing serious. Thank goodness, because looking at my car, you would be shocked that people came out all in one piece.

Long story shorter (I know what you are thinking, she should have thought about making this long story shorter about a page and a half ago), the car was totaled, and a few says after the wreck I started showing symptoms of a possible rotator cuff injury. Cameron hasn't missed a beat. When we went to get a new car, Cameron told all of the salesmen that we broke our black car. I am excited about my new car, but with new car comes car payment. That was my favorite part of my Civic - the paid off part.

Patrick is having some issues with eyestrain headaches and some vision issues on his right eye. It has been going on for nearly two weeks, and he had an MRI at 6:00am on Saturday morning. I didn't think that he wanted me to go with him until after dinner on Friday. We got up around 5:00 and got Cameron dressed. I packed a diaper bag, and a blanket. We got to the hospital and checked in. Patrick went back and Cameron and I set up shop. I pulled out the blanket I brought, turned on ETV, I went to sleep and Cameron watched some Curious George. After the MRI was over we headed home and I went back to bed.

One thing that I have felt a lot of guilt about recently is letting Cameron watch a lot of TV. The notion of just parking her in front of the tube so I can get a few moments of down time tears me up. I know that a little Elmo never hurt anyone, but I pride myself at making sure that Cameron stays engaged and involved. When she perches in front of the TV I might as well have given her a sedative. She totally checks out, and I think that a herd of elephants could rip through the living room and she wouldn't pay a bit of attention. That is unless they passed between her and Dora, and then she would fuss at them for getting in her line of sight.

Now it is back to waiting on the MRI results.