Saturday, October 27, 2012

Surviving the Recovery

CANCER FREE. Two words that I have waited years to hear. After all of the radiation, chemotherapy, and surgeries, I couldn't wait to be cancer free. Well, here I sit, cancer free, and I am unbelievably miserable. This is not what I expected. It is worse.

My surgeon warned me that my recovery wouldn't be easy. He mentioned to expect 6-8 weeks for recovery, but I just brushed that off. Perhaps I should have taken him a bit more seriously. I was so focused on surviving the surgery, that I figured any recovery would be a cake walk after all that I had been through. I could not have been more wrong about anything in my life. I felt better when I had cancer. I could eat when I had cancer. I could socialize when I had cancer. I could travel when I had cancer. I was a fully functioning human being when I had cancer. And now, I am a shell. A shell of what I once was.

But I am moving too fast. First things first, the surgery. The morning of the surgery was terrifying, but not as bad as I had expected. Perhaps it was because I had done this all once before, so I knew what to expect. I was surrounded by my immediate family, and felt very supported. And before I knew it, they were wheeling me back to the operating room. I was cold. I was shivering. I was scared. And like all surgeries, or tough times that I go through, I thought of Dan. I pictured him in Heaven, with a giant pair of wings, looking over me. And as they injected the anesthesia into my veins and had me count down from ten, he was all I was focused on.

After a long eight-hour surgery, I woke up in the intensive care unit, alone. My family was not allowed to be there overnight, but they could visit. I vaguely remember seeing them there, but I do remember them telling me that I was cancer free, and that the surgery was a success. I forgot all that once the drugs hit me. It took me at least two days to fully understand all that had happened. And once it hit me, I was relieved. I was happy. I was even happier once I got to my own private room where I could have visitors all day long, and someone with me at night. I am baby when it comes to staying at the hospital, and I like to have someone with me at all times. And they were. My family was amazing. I will never be able to repay them for the sacrifices they have made, and the support they have given me. I even had a few friends come from Santa Maria to visit, which meant the absolute world to me. To be honest, I don't totally remember every detail of them being there, but I know they were there. Drugs are a very powerful thing, and kept me quite out of it for the majority of my time there.

My last few days at Stanford were pretty rough. I began getting nauseous and sick from the meds and the feeding tubes. I was becoming anxious. Antsy. Depressed. Homesick. I had tubes coming from everywhere. At one point, there were five tubes coming from my body, and that quickly became too much to handle. So I did what any self-respecting, 27 year-old woman would do; I cried. I begged. I pleaded to be sent home. I could not handle being in the room anymore. Twelve days was long enough. They agreed, and I went home on September 23rd to start the recovery process. Little did I know, I was entering hell.

I have been home for 35 days, and I feel that I am only getting worse. The first week was terrible. I had thrush in my mouth. I was vomiting almost every day. I couldn't eat. The tube feedings were making me feel even worse. I needed help taking showers and walking up and down my stairs. It was, and still is, a very humbling experience. Then there was about a week or so where I began improving. Praise the Lord. My thrush cleared. I was able to keep food and fluids down, and I was feeling energetic. I was optimistic. Finally.

Fast forward to the last two weeks... WOW. I have never felt so bad in my life. This is definitely a step in the wrong direction. I am going backwards, and that is the most frustrating feeling in the world. I am throwing up at least three times a day, am nauseous 24/7, am taking in maybe 300 calories a day, and (prepare for over-share) have terrible diarrhea. I am so dehydrated and lacking from Potassium that I need fluids every couple days from my Oncologist here in town. Things are not going well. And I would love to be able to end this blog by saying that all of that passed, and I now feel 100%, but that would be a lie. I am in the middle of the worst of it; the thick of it. I have had some of my darkest days in the past 6 weeks. I have cried my eyes out. I have not gotten out of bed on some days. I have given up. And I have started again. 

After a follow up appointment with my surgeon last week, he discovered a "tightness," or kink in my small intestine. This kink is preventing food and liquids from properly flowing through my system and being digested. This is the culprit for all of the misery, or so I pray. I will be having an outpatient procedure to fix the problem on November 1st. A balloon will be inserted in my mouth, and into my intestine. The balloon will then be inflated in the area of, "tightness." This procedure should fix the problem instantly. Prayers are appreciated.

Losing Dan took all of my emotional strength to survive. And I know that I have got it. This is requiring physical strength and patience that I am not sure that I do have. I fear that my body is slowly shutting down on me due to lack of nutrition, and the fear is crippling. But it is something that I must face every single day. This road is extremely tough. Like I mentioned earlier, I felt better when I had cancer. I have to remember that I am, believe it or not, a healthy, cancer free 27 year old woman, like I had prayed for for so long. That is hard to remember amongst the vomiting and nausea and crying. I start each day by putting my feet on the ground, and praying for an ease from the nausea. The fact that I try to get out of bed at all is a miracle to me. So, that is all that I promise to do. I will try to be positive. And I will try to eat. And I will try to be tough. But I know those things will come and go. But I do promise to get out of bed and TRY.

Thank you to everyone for all of your love and support during my recovery! I wouldn't be where I am without all of the kind words, prayers, cards and flowers! So again, THANK YOU!!

Friday, October 5, 2012

October 5, 2010

                It is strange to think that when I woke up in the morning on October 5, 2010, that Dan was already dead. When I was in the shower, dead. Doing my hair, dead. Driving to work, singing along with the radio, dead. My world had completely crumbled from underneath me, and I was clueless. My Husband’s wonderful and loving heart had stopped beating, and I was checking work emails. The thought sickens me.
                I was in an event planning meeting around 10:15am, when my co-worker knocked on the door. She entered the conference room; her face as white as a ghost. When the words came out of her mouth, I knew. “Kristen, you need to step out. Your parents are here.” I even looked at my co-workers and said, “Well, that can’t be good.” I walked into my office to find my parents there. My Dad looked straight at me, and told me to get my stuff together and that we needed to go home. I asked why, and the following words shook me to my very core: “Dan died.” Just like that. Two words and I fell to the ground. Not a tear fell from eye. My parents walked me to their car, and we drove home. I sat in the back with my Mom and continued to just shake my said and say, “No. No. No.” I could not believe it. I had heard the words, but couldn’t comprehend them. I needed to hear it from them. I needed to hear it from the Air Force.
                The drive home seemed to take hours. But finally I had arrived at my house. I walked in my kitchen door, and there were three people standing in my living room, in their full dress blues. Col Dodge, whom I had spent some time with at some previous get togethers, walked up to me and grabbed my hand. “On behalf of the United States Air Force, we regret to inform you…” He continued talking, but I think I quit listening. It was true. Dan had been killed. I walked over to the couch and sat down, and lost it. The Chaplain came and sat next to me. And I remember looking into his eyes and telling him that I knew Dan was in heaven, and that he was in a better place. I surprised myself in that moment. I had a sense of peace over me that I could not explain.  
                That peace did not last long. I started to wonder how long they had been at my house. How long was I work, while these three individuals were waiting to deliver the worst news that any wife could hear? I so wish that I would have been the one at home to have opened the door when that dreaded knock came, but I wasn’t. My Aunt Layne had moved in a few days prior to help fight the loneliness during Dan’s deployment. She was the unfortunate one that received the knock. And I feel horrible for that. That was my job. She then called my parents, who came and informed me at work. Again, I feel horrible. No parent should have to inform their child that their best friend and spouse is not coming home.
                After that, word spread among my family, and people began showing up at my house. And each time a new person entered the door, I broke down. My poor brother was away at school in San Marcos, and had to make the long drive home, knowing what he was coming home to. And my brother-in-law was golfing in Orange County and had to make the same, long drive. I can't imagine what was going through their minds during those hours on the road. I literally sat on my couch as floods of family and friends came in to give their condolences. Some gave awkward hugs. Some cried with me for what seemed like hours at a time. And some just didn’t know what to say. But at that time, the only thing I wanted to do was talk to someone in my Johnson family, but I couldn’t. I had decided that I wanted his parents to be told by the Air Force, rather than sharing the news with them myself. I did not feel like I could deliver the news in a respectful and tactful way, which they so deserved. So I had to wait for what seemed like days. I believe it was about three or four hours after I had been informed, that Dan’s Dad had received the news.  I took my cell phone and went in the backyard, alone. I couldn’t wait to hear his voice and cry with him. I called him and he answered. “Hi Kristen!” My heart stopped. He didn’t know. How did the Air Force mess this one up? Now it was my job. My job to inform this loving and devoted father that his son had been killed. It took seconds to share the news, and we said our goodbyes. My heart broke all over again. But now that his family knew, it was public knowledge. Facebook started going crazy. My phone was ringing non-stop. And the news wanted interviews. All within hours of finding out. It was intense.
                At this point, all of my family and closest girlfriends had arrived at the house. But for some reason, I could not wait to see his EOD co-workers. His brothers. A co-worker and very close friend of Dan’s was badly injured in the same explosion. I knew that they all had Bob and Dan on their minds. But they still came to be with me, and offer me support. They arrived all together. A family. And I hugged each one of them for what seemed like minutes. It felt so nice to have them there. They offered me, and continue to offer me, a level of comfort and familiarity that I cannot explain. We all sat there and told Dan stories. We made fun of him. We joked about his mustache. I laughed. And it felt good. But every so often, there would be a break in the stories and the laughter, and it would hit me. Dan was never coming home. My Husband of four months was not coming back to me. And the unbearable pain returned.
                The night grew later, and I remember my Dad trying to get people to leave at a relatively early hour, and I fought it. I remember him saying, “Kristen has to get some rest.” No way was I going to rest. I did not want people to leave my house until my eyes absolutely had to close. The last thing I wanted to do was go upstairs and lie in my bed, and think.  Think about Dan and his last few moments of life. Did it hurt? Was it quick? Did I cross his mind?  These were not questions that I was prepared to ponder at this point. So I didn’t.
                I sat on the couch, surrounded by people, and I must have dozed off. You know that moment when you are mentally awake, but you have yet to open your eyes? Well in that moment, I remember thinking what a terrible and horrific dream that I had just had. I felt relieved. And then I opened my eyes. My girlfriends and siblings were sleeping all around me. Some were on the floor. Some were on the couch. Some in the guest room. This was not a dream. It was my very real nightmare. I glanced over to my cousin Lindsey who was sitting at the computer. She looked at me with the most loving and soft eyes, and said, “I love you Goo.” It took all of my energy to mouth the words, “I love you too.” I then asked her if this was all real, and all she could do was shake her head in affirmation, and say I’m sorry. I closed my eyes again, and fell back asleep.
                I woke up the next morning in my bed, with no recollection of how I ended up there. I was alone. I could hear the rustling of people downstairs making breakfast. All I could think to do was text his best friend, Gerald, and ask him if it really happened. I still have the text message that says, “Yes. I am sorry Sweetie.” I somehow found the strength to get out of bed, go downstairs, and start my day. Not only was I starting a new day, but I was starting a new life. A life without a Husband. A life that included funerals and memorial services in my near future. A life of constantly be referred to as, “the widow.” A life I did not ask for. But a life that I could not be more PROUD to live.
                The days, weeks and months that followed were not easy. Picking out a plot at the cemetery was torture. Writing his obituary felt like a dream. His funeral was a blur. But I survived it. And like I have said many times, I am now a changed person. I am jaded. I am morbid. I have read his autopsy report at least 100 times, and can tell you every single injury and scratch that he sustained. I keep it in my bedside table. I make inappropriate jokes at even more inappropriate times. And I must admit, I sort of like the new me. I am the proud military widow of SrA Daniel James Johnson. My greatest honor.
                To my Daniel, the last two years without you have been a rollercoaster. I miss you more than words can describe. I wish you were here to walk through this cancer journey with me, and to hold my hand. You are my Hero. You are my Angel. And I will forever be your wife. I love you. Forever and Always.