We were discharged Wednesday, June 16th. It was an absolutely insane day. I was unaware of the massive logistical challenge Patrick's at home care would be. I have had to take classes on how to care for his PICC line, and then we found out that Patrick was going to go home on IV antibiotics. I had no idea how that was going to work. We were told by our discharge nurse that we were going to have to set up care with a home healthcare service to get us the medications and help administer them. Now he is going to be on these meds for two more weeks. My heart instantly start to race. What is that going to mean for the both of us going back to work. We were assigned a case manager, and she helped us get everything lined up. A little after lunch a nurse from the agency came in and trained me on administering his medications. It isn't terribly hard, but the risk of infection for him makes it so important for things to be done just right. He can't afford to get sick like this again. While Patrick was resting I walked the length of the hospital three or four times running errands. I had to pick up his pill medication at the in house pharmacy, pick up his supplies for his PICC line, get a rental, pick up more supplies, and my cell phone was ringing off the hook with work stuff. One might think I would want to pull my hair out, but I skipped from office to office. We were headed out which meant we were one step closer to home. Patrick got a shower - a real shower and shaved. He had grown a beard and more hair than has in the 9 years we have been together. There were patches here and there on his head and in his beard where his hair has fallen out from chemo, but it still took him a good while to get it all done. He was so weak that I had to drag a chair into the bathroom for him to sit on while he shaved. He put on the clothes that I had picked up for him on one of my two ventures out of the hospital. We called for transportation to come with the wheelchair, and while Patrick waited on them, I went and moved the car. They rolled him out, he got in, and we rolled out!
Of course we hit 5:00 Houston downtown traffic and there was something wrong with the transmission of the rental. When the car was changing gears it jumped like a bunny. Six to eight lanes of traffic packed to the gills. For those of you from Columbia, it would have made malfunction junction look like a dream. It didn't bother me one bit. The sun was shining and we had the radio turned up. By the time we got to Krista's house, my face was sore from smiling. Patrick can't lift anything of substance, so I got him inside and I unloaded the car. Patrick wanted seafood for dinner, so I went to this great place down from the house. They are famous for their crawfish, but Patrick wanted shrimp. I got fried oysters while the getting is good. Thanks to BP, soon it will cost an arm and a leg to enjoy those delectable little creatures with no arms or legs. We tried to sit outside on the deck to eat. We were both well overdue for fresh air and were willing to put up with the 100 degree heat. Our plans were thwarted by the swarm of what appeared to be love children of a helicopter and mosquito. BP should look into drafting them, because they could suck start a leaf blower.
After eating, Patrick and I both crashed on the couch for a little while and watched a little TV. We were both sheer moments from falling asleep, so we called it a night early.
My cell phone alarm went off at midnight to give Patrick his antibiotics. I pulled out all my supplies, gloved up, flushed his line, primed his infusion kit, and hooked him up. I dozed for about an hour and a half until the infusion was done, unhooked him, flushed his line again, went downstairs to get his next does out of the fridge so it could get to room temperature, and went back to sleep until his next dose was due at 6:00. After the 6:00 dose I went back to sleep, and didn't wake up until nearly noon. It was glorious to sleep without the interruptions of beeping monitors, freezing temperatures, and a constant parade of nurses. It was the first true rest I had had in nearly 3 weeks. We got up, got some lunch, and ran a few errands. It wasn't until we were out and about that I realized how much weight Patrick had lost. After going to Walmart for supplies Patrick was given out, and I finished the errands while he waited in the car. Before I was able to get everything done, Patrick was given out, so I dropped him off at the house, and finished up. One of the major needs was a suitcase. As I mentioned, Patrick can't lift anything, and we had two carry on bags worth of medical supplies and them some. I checked around, and got a huge bag from TJ Max that I could have comfortably fit into. It is fire engine red with silver accent. I learned the hard way that every single black suitcase is manufactured at the same location because they all look just alike coming off of an airport carousel. Second order of business was exchanging our rental for something with a working transmission. I was NOT going to get stuck on the side of I-45 and watch my ride home fly overhead on Saturday. The folks at Enterprise were very nice, and the gentleman there seemed very impressed with my car knowledge skills. "It's a great car, but when it is changing from 1st to 2nd and especially 2nd to 3rd is seems to get hung up. It also is revving in 4th." I didn't think that was anything amazing, but I suppose many women that have issues just throw them the keys and say "It's broken. Give me a red one. It will match my purse." They told me that they had a little Vibe and then a Jeep Cherokee. Seeing that I drive a little black Civic matchbox, you couldn't pay me to drive anything as big as a Jeep in Houston, so Vibe it was. It was the super basic with manual everything except transmission. He apologized for having to downgrade me to a car that wasn't as fancy. "Will it leave me on the side of the road? No? Then it is my favorite. I think I can swing rolling down my own window." "Mrs. Stone, it will be ready in the morning at 8:00."
Patrick's PICC line has two ports in it, and it is very important to not stress the line or put to much pressure in it. A slow port can mean a damaged line, or clot, and pushing to hard on a flush could damage the catheter or move a clot with possible terrible consequences. The port wasn't totally blocked, but I went ahead and called to infusion center at MD Anderson and set an appointment for them to take a look at it on Friday. When I got home from all of my running around, Patrick was sound asleep, so I worked on some work stuff, organized the mountain of paperwork for his infusion care, paid a few bills online, and checked my email. When Patrick got up, he took me to a great hibachi place for dinner. It was a wonderful date to celebrate his recovery. Nothing like a onion spewing fire like a volcano and a chef juggling meat like a clown at the fair to celebrate.
Friday morning I did Patrick's infusion, jumped in the shower, ran got the car, and came home to pick up Patrick and it was off to MD Anderson. We both looked at our watches, realized that we were running behind and began hurrying to get out of the door so we wouldn't miss his appointment. We jump in the car, and we realized that our watches are still on South Carolina time, so we were an hour earlier than we thought. We both chuckled, and decided to go ahead out there. There is a great coffee shop in the main lobby, and a Mayan Mocha sounded perfect. As we drank our coffee we both made a few phone calls to update people on our weekend plans. The IV team got him all fixed up, and then we headed back to the house. I knew I had spent to much time here when I realized that I didn't need to Google Map my trips back and forth from Krista's to the hospital. Her house is in North Houston, and MD Anderson is downtown, so it is a bit of a drive - a drive that has become to familiar. We picked up some lunch, and on the way back, Patrick talked about going to a matinee movie later in the day. We came in and Patrick went upstairs to rest, and I pulled up the movie times, but I wasn't about to wake him up for a $3 discount on a movie. By the time he woke up, Krista had gotten home from work. The two of us sat around and talked for a while. She had some church obligations, and had been incredibly busy, and it was so nice to get to just sit around and shoot the breeze. Patrick nor I was super thrilled about the movie choices, so we decided to just hang out around the house and watch a movie on my laptop. We ate our leftover Japanese for dinner, and then headed to our room. We talked for a little while about the last three weeks and how insane this has been. We decided on watching the movie "Fireproof," and after it was over I just started to cry and cry.
Up until then I had cried some. I cried when I first saw Patrick filled with tubes. I cried when he was behaving like he had a stroke and the doctors told me that he may or may not get any better than what he was right then. I cried was able to move his left hand, and I cried when he told me "I love you." after days of not being able to speak, but I knew that these tears were on the surface. I had not had the energy or luxury of letting my true emotions loose. Then I wept. The tears came in powerful waves, and I could hardly catch my breath between them. I felt like I did when I was knocked down by a huge wave at Pawleys Island when I was a kid. The undertow was so strong that as soon as I felt like I was going to get back on my feet, the salty water would suck me down again. I vividly remember the sheer terror I felt as the sandy water got in my mouth. That is how these tears came. As soon as I thought they were over, I would once again get snatched under the waves. I wept for nearly a hour. All of the fear, exhaustion, sadness, and hopelessness poured like a heavy rain. We talked most of the night, and I filled Patrick in on some of the difficult realities of his situation. There are some things you can't tell someone until it is over. Things like the doctor telling me that if I had any legal paperwork that might be important to bring it; like the neurologists saying that he might never be able to use his left side or talk again; like when I had to wake him up to remind him to breath; like when I was afraid that I wasn't going to make it to Houston "in time." Things like that. We both cried. There were tears of sadness and of joy. We went to bed with the knowledge that Saturday would bring us home.
Saturday, June 19th was our 6 year wedding anniversary. Patrick woke me up when he got up to go to the bathroom right before his infusion. I pretended to be asleep until the door shut, and then I leapt out of the bed like a gazelle, pulled out a card I had picked up for him when I was out getting things for our trip home, put it and a piece of chocolate on his pillow, and played possum. The card talked about a husband kissing his wife every morning, and it made me cry right there in the isle of Wal-Mart. For the last 6 years I have woken up to a kiss on the forehead and "I'm gone. I love you." That kiss and those words I had longed to hear for weeks. When he came back into the room I heard him say "Aww." I opened my eyes and told him happy anniversary. He said "I didn't get you anything." Before he could say another word I told him, "Patrick, you have given me exactly what I wanted for our anniversary. By dinner time we will be home, and that is the best gift you could ever give me. This is the best gift I have ever gotten. You, healthy and on a plane home." He read the card, and leaned over with a kiss. After that, I got up and gave him his infusion, jumped into my clothes, and we said our goodbyes to our Houston family. We got our enormous red suitcase into the car, loaded our carry ons, and hit the road. I was grinning from ear to ear.
We were told by Coram Infusion Services to be at the airport about two hours before our flight because we had liquid medications. They had given us lots of documentation to prove that what we had actually were medically necessary liquids. The woman that I spoke with told me this horror story about a little old lady that was not allowed on the plane because someone at the TSA thought that her medications might be a bomb. Keep in mind this little lady was in her late 70's, about 95 lbs, and pushing a walker. We checked in, and the attendant behind the desk asked me if my bag weighed more than 50 lbs. I told him that I had no idea, all the while thinking I felt like I was pulling a case full of bricks. Because of Patrick's spinal fluid issue, he couldn't pick up anything. I was dragging our suitcase that I could have ridden in, two carry on bags, and my backpack. They weighed the bag, and it was 54 lbs. He told me that it would cost an additional $50 to check our bag. We opened our suitcase up, and pulled out 5 lbs of stuff. A few pair of jeans, shoes, and some medical supplies put us at 49.5 lbs, and $50 in the black. After printing our tickets, we headed off to security. I just knew that I was going to end up getting a cavity search from some woman named Gladys and get put on a terrorist watch list. I try my best to hurry and get my shoes off, unload my laptop, and take my phone out of my pocket. I hate airport security. I always feel like the people behind me are irritated that I am not moving fast enough. They probably feel the same way about the people behind them. When I got to the security desk, I told the guy at the x-ray machine that I had medications in my bag, and as I began to pull out the paperwork, he just shooed me on through the metal detector. I must not look like a Homeland Security risk.
Once we cleared security, we headed off to our terminal. We hadn't had anything to eat, so we stopped for a doughnut. After an overpriced yet delicious blueberry filled mouthful of joy, we made our way to the terminal and had a seat. We had a good hour layover in each of our stops. We sat and waited, and waited, and waited. We were delayed 47 minutes. Every 10 minutes or so we would hear, "For those of you waiting for Continental flight 1562, we are still waiting our your plane to arrive. Once it lands, it will be cleaned, and re-catered and then you should be on your way." Re-Catered? Really? We were flying from Houston to New Orleans. It is a 1 hour flight. How much soda could one plane need? I just knew in my heart that we were not going to make our connector to Charlotte. We landed in New Orleans 15 minutes before our flight to Charlotte was to take off. Much like when Patrick's parents and I flew out to Houston, I took off in hopes of catching the plane. I ran to the closest TV monitor to see what terminal our plane was, and they only had the flights for Continental (and our second flight was with US Airways). I had to stop and ask someone, who had to call on her radio. She gave me the terminal information, and I take off only to find that in order to change from one terminal to another in New Orleans you have to go through security again. At the sight of the x-ray machine, I knew that all hope was lost. Because I had to ask about our flight information, Patrick had caught up with me. "How have you only gotten this far?" Holding back tears I tell him, and we rush to the terminal. We get to the counter, and there was this very friendly man who knew exactly who we were. "Are you Mr. and Mrs. Stone? I am so sorry, but the plane is gone." I start to cry, and step to the bathroom. I called my mom, and the conversation went something like this: "MOMMA!! (crying crying) I can't believe it. We missed our stupid plane. (crying crying) We have got to get home. I can't believe this. All I want to do is come home! (crying crying) I gotta go. I love you (crying crying). *click. I wash my face, and head back to the counter. Keep in mind that Patrick is wearing a mask, and is noticeably weak. I pour my heart out to this enormous man. He clicks away on his computer with a very sweet look on his face. I knew that look. It was the same look that I had gotten on the way in. "I am so sorry Mrs. Stone, but there are not more flights to Florence until tomorrow. Is there any other airport close by?" It didn't occur to me to say Columbia. Flying out of Columbia always costs an arm and a leg, so it isn't really in my airport brain even though my house is less than 5 miles from the end of the runway. "If you can get me to Charlotte, I can get somebody to come get me. It is only a few hours." "There isn't anything closer?" Patrick chimes in with a very uncertain tone in his voice. "Well, Columbia." There was more clicking, and the words that quickly turned my frown upside down, "Sure. We have two seats to Columbia. The flight will land about 7:00 this evening." My heart let! Patrick went and sat down while we got the details straight. He asked about Patrick. "If you don't mind me asking, is your husband ok?" I commence to tell this perfect stranger the Reader's Digest version of the last year. He listened with a shocked look on his face, and said that he would be sure to keep us in his prayers. I call Momma back and fill her in on the updated flight information. I think she was relieved more by the fact that I wasn't hysterical than the fact that I was on the way home.
We make it to Charlotte without a hitch. I called my friend Denise and asked her to pick me up from the airport. She and I sing together at church, and she is a jewel. She lost a brother to cancer, and we have become very close since Patrick was diagnosed. She said she would be there with bells on. As soon as the wheels of the plane touch South Carolina soil, I called her again, we deboarded, and rushed to the baggage claim. By this point in the day, Patrick was totally exhausted. I was wearing my backpack on my back, his backpack on my chest, and I was pulling both of our carry on bags behind me. I got a number of funny looks, but they were not heavy at all. It must have been like when someone single handedly picks a car up off of a child. never in normal circumstances would it be possible, but I was walking on air. When I got to baggage claim, I told Patrick I would be right back. I stepped outside to she Denise with a huge smile on her face. She and I ran to each other and gave each other a huge hug. I managed to fight back tears, and she took my bags. I went inside and told Patrick to go ahead outside and get in the car, and I would get the bag. It never fails that my suitcase is the very last one to come down the conveyer belt, but that fire engine red bag was the first one to spill out. I snatch it up, and jump into the car.
I couldn't get out of the car fast enough when we got home. I run to the door, to find it locked. I rang the doorbell, and I hear the dogs freaking out. Cameron saw me through the window, and her face filled with pure joy (as did mine). "MOMMA!!!!" she squealed with delight. Momma opened the door, and Cameron leapt into my arms. "Cameron! I missed you so much! I am so glad to be home!" In the most precious little voice she said, "Momma, I love you," and she threw her arms around my neck and squeezed tightly. I had been waiting for three weeks for that. I kissed her all over her little face, and she erupted with laughter. I put her down on the ground, and Patrick was greeted with just as much enthusiasm. We were home. I had gotten my anniversary gift.
Over the course of this trip I realized that it has been nearly one year to the day from Patrick's first surgery and his brush with death. This journey started the Friday before Memorial Day of 2009 with a surgery we thought was to remove a large sinus polyp. The Tuesday following that, we got the call that it was cancer. Three surgeries, three months of radiation, and a round of chemo later; I found myself sitting beside Patrick's bedside on Tuesday crying , and afraid that he wouldn't make it through the night. One year to the day. I can hardly believe it has only been a year. Our family has been through more in a year than many people will face in a lifetime. Through prayer, faith, love, support, and shear determination we have pressed on. I have an entirely new appreciation for my family. Everyone knows that at some point you are going to die, and that it could be tomorrow. For most people, especially my age, this notion is tucked away. I had to look that hard reality square in the eyes as I held Patrick's hand as a machine did his breathing for him. I had to try and wrap my brain around the fact that he may never walk or talk again, and I was always thinking of Cameron, and what this all would mean for her. I can assure you that I have an entirely new appreciation for those that I love, and I will never take another moment together for granted. These last few weeks have been a complete nightmare, but by the grace of God we woke up from that nightmare and are facing a new day.
