Finding Liver Cancer
Up until a couple of years ago, the biggest threat to my life had been the Hepatitis C Virus. I got that “Not Detected” and was so excited. I still had cirrhosis scarring, on my liver, and that was a letdown. I also knew that medications and tests would be a permanent part of my future. But by golly, I had a future! The virus was no longer attacking my liver. I went on my merry way until that one day when my 6 month ultrasounds showed a spot. Dang it. Dang Dang. Dang it.
The ultrasound technician was young. I chatted her up asking questions about her school and family. She was expecting her first baby and described the nursery to me with such joy. We wiped the gel off of my tummy and I headed to the lab for my fasting blood draw. Then I jetted to the cafeteria to get some juice to mix my protein powder with. It was a routine that I’d been through twice a year for a few years now.
When I finally got around to the doctors office, I felt a bit embarrassed. I’d worn a bright green shirt and running capri style pants. I had made that 5 A.M. got-to-be-fasting drive bunches of times. I always kept my bicycle in the back of the car, so I decided to go ride Lake Hefner after my appointment. Now, while chugging my protein shake, I settled into the office and ignored people’s stares at my neon outfit.
I scrinched up my eyes to look at facebook on my phone. Soon I was called back and the nurse asked all the same questions. Double checking medication doses. How was the hepatic encephalopathy? I hadn’t shaved my legs and was hoping they wouldn’t check for ascites. She left me alone and I was back on my phone. I loved seeing my medical staff. I felt like they love seeing me.
Next, the nurse practitioner came in and looked at the computer screen. She had the labs back and rattled off numbers, complimenting my hemoglobin. She then reminded me that my platelets were always going to be low. I liked her new haircut and told her so. She compliments my hemoglobin, I compliment her hair…… She clicked to a different screen to get the result of the ultrasound. I saw the look on her face. It changed instantaneously “You’ve got a tumor” she pronounced.
Oh Shit. Did I say that out loud? I’d never been a cusser. That’s because I’m a teacher. I was afraid if I cuss at home, I’d cuss at school. This announcement seemed worthy of the expletive. Trish echoed it back to me, confirming that she had heard me and agreed. I was indeed a cusser now. We both got teary for a second, me staring at her, and her staring at the computer. Then she made the first move and sprinted out the door.
She wasn’t gone 30 seconds to get the doctor, the MRI scheduler, and the nurse assistant. The room was suddenly, and comfortingly crowded. My team. My posse. They were all here doing… stuff – you know, stuff to help me. I watched and half listened to all they said. The tumor board meets Tuesday, get a CAT scan today, call for insurance approval, an MRI on Monday.. It sunk in like a bullet in a watermelon. My brain started to implode and then I took a step back. I observed what was going on in the exam room, like it was television episode. I saw them working together as a group.
This sweet, generous, brilliant group of people knew that it was Hepatocelluar Carcinoma. My doctor was mumbling and drawing an adenoma on the white board telling me that it could be something other than cancer. I had never seen him so chatty and nervous. The scheduler dialed my insurance company again. I felt sorry for her. Glancing around at my nurse practitioner, she was looking hard into my eyes, as though testing my strength. This was real. What are my options? Did I ask that out loud? Yes, because she answered me. “We can get you on the transplant list. You are strong. There are a lot of ways to treat a tumor.”
The clock ticked slow. I didn’t get the CAT Scan til after 5. By the time I got to Lake Hefner, it was hot hot hot July Firecracker Oklahoma hot. I rode several miles with my tears drying as they rolled toward my hairline. I prayed out loud. I made deals with God, reminding Him of His promises. I pedaled as hard as I could with legs that felt like jelly.
Before loading my bike back into the car, I asked a group of people to take my picture in front of the lighthouse. My story about having just discovered liver cancer tumbled out. Oddly enough, they needed reassurance that I was going to be fine. I gave them my best smile and thumbs up. I told them that I found out a lot that day. I found out about liver cancer. I also found a place of peace in my heart. More than that, I found strength for the battle. That’s all you need when finding liver cancer. I promise. Xo Karen:)
It was July 2014 when the tumor was first sighted. My elevated AFP marker was a big indicator. So glad to be celebrating 2 years later! xo
12 thoughts on “Finding Liver Cancer”
Thank you, Karen. We have 2 more weeks until my husband’s follow up PET Scan to find out results of CyberKnife Treatments for his liver cancer. Getting nervous but he feels and looks great. Let’s hope and Pray. How are you?
I sure remember those days! I hope he’s feeling good and that the tests all come back with a shrunken tumor. That’s what they really look for. Is his MELD score climbing? Keep me posted on what you find out. I’m certainly keeping your whole family in my heart and prayers.
Love,
Karen
Thank you for sharing your story…. You are an inspiration!
Joel,
It is always so good to touch base with you. I’m glad to see that you’re hanging in there. I hope you get to enjoy the family this weekend. I know how much you love them! I love you and wish you the best summer ever!
xo Karen
I was already on the transplant list and was feeling good. I’d returned to work part-time I was in and out of the hospital for several years but I’d been good for the last several years but my doctor found a dark spot. It wasn’t a cancer but he put me on a routine of CT’s every 3 month’s. Several years later my spot doubled in size over 3 months. I had a TACE a month later and finally a transplant a year later. I’ll never forget that phone call from my doctor.
I’m thankful that you were able to get a transplant in time. I know that a climbing MELD score is a frightening and exhausting experience. Sadly the cancer racks you up fast on points. Too bad that it is also a close call.
Does everyone who transplants remember every single thing about that day? I sure do too! Congratulations and thanks so much. I hope your July 4th holiday with your family is awesome!
xo Karen
Thank you for your posts. I am glad you are doing well. Some of the things you have mentioned I have never heard of like a MELD score. I also have Stage 4 cirrhosis from a lifetime of HepC. I believe if I had not responded to treatment I wouldn’t be here today. I am trying to move beyond it and except what I have left but it is hard. Keep up the positive posts. Take care, Diana
Hello Diana! Thanks so much! I am happy that you are cured of HCV. What treatment did you do? I did the Incivek, Interferon, Riba. I’ve been cured for 4 years. To get a MELD score there is a calculator available on the internet. You have to have recent lab work as it asks for bilirubin, albumin and some others. I get checked every 6 months with blood work and an ultrasound of my liver. We who had HCV and now cirrhosis are supposed to be checked at least once a year for liver cancer. Studies show we are 8 times more likely to have liver cancer. I was going once a year but due to my age, I now go every 6 months. Like you, if I had not gotten rid of the HCV I would likely not be here or would be at the end stage of cirrhosis. In 2008 I was told I had 5 to 10 years to get rid of the HCV before liver failure.
I am so happy to hear that you are cured! What an achievement! Karen is a gift from God, she has so many articles to read. I love her very much. Please keep in touch! Dee
Yes, I remember every single second of the day I found out I had HCC. My team and I had been keeping a careful watch for years. The diagnosis was a double edged sword. It terrified me and my family, but it also got me on the transplant list with a high MELD score. Went through the chemo-ablation and first transplant took place 4 months later. Had a significant struggle with rejection and landed in the ICU sicker than ever before and remained there for nearly 3 months. Dying for another transplant. I am so fortunate to be here as one did become available. A miracle as this one needed to be a perfect match. Out from transplant nearly 7 yrs and treated and cured of HepC for a year and a half with fibrosis stage 2-3 completely healed. It is indeed a brand new disease free life. Forever grateful. Thank you for sharing your experience and your incredible strength, Karen. ❤️
Oh my! Your story is amazing! You have really been through it all. I can’t begin to imagine the feelings you felt. I remember how bad I felt the day of and months after finding out I had HCV, then cirrhosis. I thought it was a death sentence. Thank you so much for sharing your story. It will help so many people. I think it will give people hope. I have been cured for 4 years though I am always holding my breath, afraid that they will find liver cancer during my yearly exam. (It was just changed to every 6 months) Karen has a page where people share their story. I bet she would love to have yours. You can find a drop down menu on the main page or there is also a “start here” icon that is very helpful. Thanks again! Dee
Hi there, I was diagnosed with cirrhosis November 2013, treated with PegInterferon + riba. I achieved SVR, and stopped the virus, which has been in my body for 35 years. I am under surveillance for HCC, US, FibroScan, blood test and endoscopy every 3 yrs.
I feel very tired and sleepy, my hair is very thin, and have pain every part of the body. My thyroid is damaged with Hypothyroidism. Vitamin C deficiency and having supplements now. I feel pain in my liver . This is no life. My liver is full of scars and is damaged, thanks to useless GP, who are incompetent overpaid individuals. I was ignored for years. Visiting my GP, and not ordering cheap blood tests, is a blasphemy. GP put patients are risk. I cannot understand their role.
I completely understand how you feel. I too was not cared for well and had HCV for 30 years. Despite having symptoms, low platelets, red spots on my legs, I went to doctor after doctor trying to find out what was wrong with me. I am sorry for what you are going through. It is a nightmare of one problem after another. I do believe that parts of the liver can improve over time. We have to follow a liver healthy diet which is much like a heart healthy diet. I try not to give up hope that I will improve. I may just be fooling myself 🙂 I go every 6 months for an ultrasound and blood work. Again, I understand how you feel. Dee
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