I opened my eyes. Scott was sitting in a chair beside me. Facing me. Where was I? I looked around. I was lying in a dimly lit room in a bed that wasn’t mine. Then I saw the doctor. He stepped around where I could see him. He started explaining…everything looked good. You have a little red irritation so I’m writing a prescription. You won’t need another EGD/Colonoscopy for ten years. However, I would like for you to follow up with a physician at the Liver Transplant Unit. WAIT! Hold up! WHAT???
He repeated. I don’t know what he said after that because my mind got crazy…foggy. Like someone had set off a smoke bomb and things were all smoky and mixed up in my head. Huh? You want me to see a liver specialist? Really? What’s up God? Seriously? I honestly laughed. My mother and father both had substance abuse issues. I had always been scared I would end up just like my mother, so after I had my kids I avoided things that might lead me down that direction. Sure, I did crazy things I wasn’t supposed to in high school and pre-kids. But since then I lived a pretty straight and narrow life. Now, I was the one being told to follow up with a liver specialist. Wow! What a mix-up!
I played along…just in case…but I laughed every time I told someone I was going to see a liver specialist. I know! That’s the crazy part of the sweet. I have a warped sense of humor. I laugh at the craziest things! For instance, one of my favorite movies is – August: Osage County. I laugh almost the whole way through the movie. It’s really a sad dysfunctional movie. Most people turn it off. It’s too crazy for them. But I get it. I understand the craziness. In a weird sort of way, it makes me feel more normal.
I did as the GI doctor instructed and followed up with the liver specialist. I met his nurse first. She was lovely…kind, caring, knowledgeable, compassionate and sweet. Then I met him. He was also kind, caring, knowledgeable, compassionate and humble. I loved them both and I knew I was in the right place. He looked over my information and asked me questions. So I filled him in as best as I could remember…
…about 3 years prior to having the EGD/Colonoscopy, I went to see my primary care physician and explained to him that I thought I might have a brain tumor AND an abdominal aneurysm. He and his nurse are also wonderful. I love them too. His nurse is my friend and she knows my sweet and my crazy. Those are good friends to have – ones who know the good and the bad and still love you. He could have treated me like I was crazy. But he didn’t. He just kindly smiled and asked me why and I gave him my symptoms. Honestly – nurses can be the worst patients. We know just enough to get us in trouble. Sometimes we convince ourselves we have some terrible debilitating disease or diagnosis. He listened and then he ordered some tests. At the follow up appointment, he reported good news – I didn’t have a brain tumor or an abdominal aneurysm. However, they did find a lesion on my liver. Lesion is a scary word. Lesion on my liver – sounded to me like “cancer on my liver.” But it wasn’t. Over the next several weeks, months and couple of years – my doctor ordered more tests to monitor for growth and to determine exactly what it was. The radiologists hadn’t ever thought it was anything to worry about.
The liver specialist listened patiently then took me to the computer and showed me my images and explained them to me the best he could. He told me normally a simple cyst is smooth on all edges but this one had “fingers” on one side. He didn’t think the cyst was anything to worry but he couldn’t be sure which was worrisome. I liked him. He explained things to me in a way I could understand and he took time with me. I appreciated him and knew he was really good. I continued to follow up with him. So every 6 months I would follow up with him and then I’d have more images done to check for differences. I saw him for a year and a half and there were no significant changes. However, those “fingers” were still a concern. We discussed numerous options and concerns. He wasn’t comfortable releasing me just yet. Then he asked me to do something that truly amazed me…he asked me if I’d go to the hospital where I had always had my images done and get the images on a disk. Not the reports that had been interpreted by the other hospital’s radiologists but the images. He was going to have his radiologists review them. As long as they agreed with the previous findings – he thought he would be comfortable releasing me. So that’s what I did. I got the images on disk and took them to him. I liked him! But more importantly I trusted him. I knew he was going above and beyond.
So up until the day the gastroenterologist told me to follow up with the Liver specialist all worry had subsided. The truth was – even when he referred me, I wasn’t ever worried. I had a sense of peace and I thought someone made a huge mistake but whatever – I’d follow up. I called my mother and told her. She had a warped since of humor too. I said can you believe I’M the one going to the transplant unit? Mother had been through interferon treatments because the alcohol had damaged her liver so much. She sounded worried. I made a couple of more jokes and we hung up. I was seeing a liver specialist. Not my mother the addict. But me the one who was too scared to drink much.
A couple of days after dropping off the images I received a phone call from his sweet nurse. She let me know the liver specialist’s radiologists disagreed with the other hospital’s radiologists. The liver specialist wanted to aspirate the cyst and run tests on the fluid. They wanted to specifically check for cancer tumor markers and levels. I still couldn’t fathom that I was seeing a liver specialist. I talked to his nurse for some time. She was always so knowledgeable and I trusted them both. I agreed to the aspiration. Scott took the day off and drove me up there and took great care of me. I knew it would be nothing and didn’t really worry. It was an outpatient procedure. They would call me in a couple of days and let me know everything was fine. At least that’s what I thought.
Then my life changed…in more than one way…
July 23rd 2013 – the worst day of my life. I was a little over 2 hours away from home orienting one of our new registered nurses when I received the devastating phone call from my son telling me my nephew had passed away. I was crushed. Devastated. We all were. My heart hurt, my mind swirled, my thoughts were with my family, his mom, step dad, fiancé, daughter, brother, grandmother, aunts, uncles, cousins and all who loved him. My liver issues were nothing compared to this devastation. I somehow managed to compose myself and get through the orientation before loading up and traveling the two hours back to our office. I had ridden with my boss and another Director that day which was unusual. They tried to get me to head back right after I got the news but I knew people were counting on me to get the orientation completed. I knew I would need time off for the funeral and to help as best I could…so I shoved my feelings and emotions in a box and put it aside until I could deal with them when I got home. I learned to do that at an early age. It was part of what I had learned from my mother’s addiction. File away hard feelings and deal with them later. I was dying on the inside…I prayed.
We were headed back to the corporate office (and home) when my phone rang again. I expected it to be from my family but as I looked at the number I realized it was from the office of my liver doctor. I answered the phone waiting to hear his nurse’s voice. I was surprised to hear the doctor himself. Up until that day, he had never called me. He said “Kandy, we got the results from the aspiration and your results were extremely high. Extremely high. The cyst needs to come out. We need to know for sure what it is.” What? This couldn’t be happening. My brain couldn’t wrap itself around the two major events I had just been slammed with in only a couple of hours. My sweet 27 year old nephew had passed away. That was devastating. And now I needed liver surgery? Me? I’d never had any surgery in my life and now I was facing a major surgery. I tried to make sense of it. My poor doctor knew nothing of the day’s events that had unfolded earlier. I know I sounded crazy…“okay – when does it need to be done?” I asked. “Can I wait several months?” My head was swirling. Nothing was making any sense. I kept talking…” I just started this exercise program and need to finish it.” My boss, who knew about my liver issues was sitting in the front driver’s seat and as I spoke, I saw his head flip around and he looked at me…several times. He is a kind, intelligent man whom I trust a great deal. I knew I must sound crazy. I explained to the doctor – I’m so sorry, I just found out a couple of hours ago that my nephew passed away. I think the doctor realized I couldn’t comprehend all that was being thrown at me. He asked if I could come in and see him in a couple of days after the funeral. My nephew’s passing was devastating for my family and me.
After the funeral, I went to my appt. He asked me where my husband was. I told him I didn’t bring him. I don’t’ think I still fully understood the enormity of the situation or maybe I was just trying to get through it so I minimized it. He went on to explain his thoughts and recommendations. After speaking with him at great length and consulting several other trusted and knowledgeable people, I decided to have the surgery to remove the cyst. There was a chance it could be or could turn into cancer and I didn’t want to take any chances. So, my very first and only surgery was a liver resection. The left lobe of my liver was removed. You know what’s amazing? Our liver regenerates. So after he removed the left lobe – it grew back. Isn’t that amazing? I also elected to have my gall bladder removed. My doctor prepared me well. He said I’d be in the hospital for about 5-7 days and be off work for 3 months. The surgery went well. I was released from the hospital after 3 nights. I was back working half days after three weeks. Scott took three weeks off to take care of me and was continuously by my side. He was an amazing caregiver. Much better than me. My sweet friends and family cooked me meals, visited the hospital, checked on me and took excellent care of me. The cyst ended up not being cancerous but he told me there was a very good chance in 7-10 years it would have been. My surgery was a blessing. In 7-10, surgery might have been too late. I was thankful.
After I got home from the hospital, I googled liver resection recovery. Had I done that prior to surgery -I’m not sure I would have so easily agreed. The internet was full of people’s devastating recovery stories. The thing that amazed me most was that I hadn’t googled or researched the recovery of a liver resection at all. I google everything. I mean everything. I didn’t google one thing about liver resection until after I had already had the surgery. That wasn’t an accident but it wasn’t something I did on purpose either. Divine intervention. After reading everything I read – I would have been scared and I’m sure those things would have affected my own outcome.
I’m still not sure why the gastroenterologist sent me to the liver specialist in the first place. What did he see that others hadn’t? I went to see him not to long ago thinking he might tell me some divine reason he referred me. He didn’t really remember and since we were there for Scott’s appointment he didn’t have my chart in front of him. I didn’t need him to tell me anyway. I knew it was a divine intervention. All of it – from the very start.
I’m still blown away that I had a liver resection. I wouldn’t believe it but I have a huge scar to prove it.
I can’t explain all the ugliness in the world. I can’t explain about why and when someone passes away. But I do know God is good. And when we look hard enough – there is always sweetness.
“My scars tell a story. They are a reminder of times when life tried to break me, but failed. They are markings of where the structure of my character was welded.” Steve Maraboli
Finding the sweet side of crazy!
Kandy