Diagnosed in 2003 and passed away in 2016
My life before cancer was actually kind of boring. I was in perfect health, not much of a partier, more of a homebody. I moved out of my parents’ house when I was 22 and moved in with my best friend. I met my husband about 2 months later. We started dating on and off for the next 3 years. He was a partier and I didn’t know if that’s what I wanted in a husband. Once I decided to move on for good is when he changed. We got engaged the summer of 2002. Everything was perfect! Wedding planning was going great, the countdown was dwindling and the day was fast approaching. The day was January 31, 2004. My last dress fitting was at the end of October. I couldn’t believe in 3 months I would be married! On November 12th I was at work sitting at my desk and clumsy me dropped my pen on the floor. I bent over to the right to pick it up and I had a pain that felt like someone stabbed me with a knife. It was so intense I fell out of my chair onto the floor. My co-worker sitting behind me seen me fall and rushed over to help me, but the pain was so bad I told her not to touch me. I sat for a few minutes as the pain started to lighten, then she helped me up to my seat. I noticed my vision was blurry and I saw white stars. I sat for a while drank some water and after some time started to feel normal again. My co-workers urged me to go home. So I went. That evening I was making Lasagna, as I was pulling it out of the oven I felt that sharp pain again. I dropped the pan, which fell onto the oven door and my hands touched the oven door, burning them. My fiancé ran into the kitchen to see what happened and if I was ok. He told me I better go to the doctor the following day to see what was wrong. I woke up the next morning and informed work I was going to swing by the doctors on my way in to work. Once I was in the exam room the doctor had me lay down and pushed on my right side and I instantly screamed. He said he felt something large and he ordered a CT. I went to the hospital and had a CT scan. As I was changing to leave a nurse came up to me and told me once I was dressed to wait in the waiting room for the doctor. I was confused because the doctor told me at his office he would call me with the results. So I waited, and waited, and waited… finally I said I’m leaving, when the doctor arrives call me and I’ll talk to him on the phone. They told me no you cannot leave. You have a mass on your liver. I said, what is a mass? Then they said a tumor, what is a tumor? They explained to me what both were and that I needed to stay. I immediately called my fiancé and told him to get here now. The doctor finally arrived and had me do testing and the testing showed my blood level was half what it should be. They admitted me and started giving me blood. I received 2 units that evening. In the morning, the doctor came in and told me I needed to go to a hospital in Chicago because he had never seen a tumor that large in the liver during his 23 years as an MD. That scared the s#%@ out of me! I was released that next day because it was my bridal shower and I wasn’t missing it. The following Monday I made an appointment at Northwestern in Chicago. Northwestern did a lot of testing on me and told me I would have the results within a week. We went to my family’s for Thanksgiving, had a great dinner and some awesome family time. On our way home my phone rang with a Chicago number. I looked at my fiancé and said “You’ve got to be kidding me, on Thanksgiving. This is serious”. I answered and they asked if I was ok getting my results over the phone. I said yes, because I knew Dan was with me. They told me I had liver cancer.
My doctor’s appointment at Northwestern was pretty much a blur. There was so much said that I didn’t understand. The main thing I understood was they wanted to do surgery within 2 weeks. I said, oh no that’s not possible. I’m getting married in 8 weeks. Can we do the surgery after the wedding? Politely the doctors said “No”. We have to do it now, or you won’t be here in 3 weeks. What??? My tumor was so large, 11cmx14cm, encompassing the right lobe of my liver and weighing 9.5lbs, that the tumor was cutting off my blood supply to my heart. My right hepatic vein was dead and my left hepatic vein was only working approx. 30%. My liver resection surgery was scheduled for Dec 12, 2003. 82% of my liver was resected, seven of nine liver sections were removed. I recovered well. Dan and I got married on January 31, 2004!
I was in the OR again in March 2004 for a right diaphragmatic hernia caused by the tumor. Three weeks later in April 2004 I experienced a small bowel obstruction from the hernia and had 6” of small intestines removed. Recovery was rough.
Then we received the BEST news of our lives on December 8, 2004. I was pregnant!! I was scared, shocked, and completely overwhelmed. As you can tell it was not planned. My surgeon told me not to get pregnant until at least I’m completely recovered and one year of clear MRI scans. I was super scared to tell the doctor. It all worked out well. I gave birth naturally to a baby boy named Lane on August 15, 2005.
My clear scans were short lived. In June of 2006, I was told my cancer had returned. I had a 3cm tumor attached to my right diaphragm. I was devastated to say the least. I felt hopeless, scared for my husband and my 10 month son. I instantly started to think of his life without me. It was horrible. I fell into a depression. I would lay on the couch and cry for hours. I really thought my cancer was gone. I was so blinded by this disease. I thought it’s gone and out of my body. Yah! Umm…Not so much. My family and friends helped me through the surgery. Little did we all know I would need nine more surgeries in the next 10 years? Three months after this surgery my MRI scans showed another small tumor near my right diaphragm. Back to the OR I went in October 2006.
For the next 2 ½ years I was tumor FREE!! My husband and I decided Lane needed a sibling. I received the “OK” from the doctor and BAM I was pregnant the next month! I was walking on clouds. I gave birth naturally to our second son named Luke on June 27, 2008. Two boys, I was in love.
Dan and I decided we wanted to buy property to live in the country so the boys would have the outdoors to do anything they wanted. We bought 13 acres, picked out our house, and planned on breaking ground in May 2009. The brakes were put on, again. I had a chest tumor show up on my scans. Off to the OR I went. I had surgery in April 2009. We decided that we weren’t letting this cancer disrupt our dreams. We broke ground on our dream house May 15, 2009! I believe this is when I changed my outlook on my disease. I realized there was nothing I could do to stop the cancer from forming. There was no cure. My husband and I made a pack that I would live my life as normal as I could and be as happy as I could for my boys. If/when a tumor decides to pop up again I’ll fight it with everything I have, recover and move on. I will NOT let it control my life. I wanted my boys to grow up knowing their Mom fought with dignity, strength, hope, faith and grace against her cancer!
The doctors decided to have me do radiation in my chest to help prevent any tumors near my mediastinal. It was a tough spot to get to multiple times. It was behind my heart in front of my esophagus. I did radiation for 6 weeks every day. The only real side effect I had was fatigue. Not sure if it was from the radiation or the traveling to the hospital every day.
We moved into our new house in Jan 2011. I thought I was in a dream. I never thought I would be here to see my forever home. As we got settled in my next scans were approaching and I felt uneasy and scared. I told myself things are going good. I hope I’m not kicked in the gut again. Well, I was. There was a very small lymphoid node behind my liver that was showing up. The doctor suggested to get it out. Off to the OR I went in April 2011. My recovery went well. I went on for the next year not knowing that the doctors were watching a spot in my liver, but weren’t for sure if it was cancer. It wasn’t growing hardly at all. To date I had never had the cancer return to my liver. It has mainly stayed near my right diaphragm and chest area. The doctors decided not to wait until this spot grew they wanted it gone. I had a procedure called Chemoembolization. Chemoembolization is when they go through your groin up through your portal vein into your liver and inject chemo beads directly into the tumor. Within 3 weeks the spot was black. It was never biopsied, so we really don’t know if it was ever cancer. I did have a complication with the procedure though. An abscess formed in my liver. It was large. They inserted a drain tube into my side directly into my liver. For the next 4 months it drained. My doctor then noticed my liver wasn’t functioning like it should be. I was informed I would need a transplant. For the next 3 months I would go in every 2 weeks for a tube check to make sure the abscess was not filling up and my liver secretions were draining out through the tube. In the meantime, I was going through 4 weeks of grueling tests and procedures for the transplant. Once all the pre-testing was done I was told I would know within the next couple of months if I was approved for the transplant. On Feb 22, 2013 I went for my normal tube check appointment. My doctor came into the room (which was odd he usually was behind the glass) with another doctor. They came up to me and showed me the TV screen where you could see my liver. Looked foreign to me…ha-ha. They showed me that the abscess was gone! My liver was functioning normally again, plus it healed itself! WOW, my tube came out and I was bag free! What a great surprise. The doctors still suggested a transplant in case it was to happen again. I could live with that!
On June 12, 2013 I received the call, I was officially on the liver transplant list. I then decided to resign from my job where I worked for 20 years. Yes, 20 years! I started the day after I graduated from high school. I was ready to move on and needed some time to get my life on track and prepare for an upcoming transplant.
The doctors had been watching a particular spot in the dome of my liver for about 2 years unannounced to me. So when I had my scans in Oct 2013, they decided it needed to come out. Plus I had a small nodule on my right chest wall. Due to the spot in my liver growing slowly and it was stable they choose to remove the chest wall nodule first. That surgery was in Jan 2014. Once the pathology came back and it was confirmed cancer I was taken off the transplant list. In April 2014, they removed the tumor from the dome of my liver. During the surgery, the surgeons realized that the tumor was not in my liver. They actually could not find it in my abdomen. I know, sounds weird, right? After bringing in another surgeon to help look for it, they found it wedged between my heart and my left diaphragm. Scary, right! Yes, I was worried and so were the doctors due to it being right against my heart sac. Thankfully everything went well and I started my recovery. This recovery was nothing like any of the others. I was very sore and week. It took me almost 4 months to start to feel like my old self. Then BAM I was back in the OR in Nov 2014. I prayed for a break, I so desperately needed one. I still as of today don’t feel 100%.
I started a clinical trial in Jan of 2015. All seemed good at the start, but issues with my blood and iron levels started to take a toll on my body. I stopped the trial in May. I needed blood transfusions every 2 week until July 15. I went to see a hematologist and through iron injections and folic acid supplements my body is finally starting to produce its own blood again!!
Through the 12 + years of fighting my disease I’ve been approached by numerous people asking how they can help me. Many people offered to put on a benefit, but at those times I wasn’t ready for that. So after this last surgery I felt like I needed something. After talking to my parents and my husband we decided a benefit was just the thing I needed at that time. With mounting medical bills and traveling to New York MSKCC for treatment, a benefit was organized for my family and me on June 28th 2014. It was great. I had seen so many people I hadn’t seen in years. It felt so good to catch up with all my family, friends and people I didn’t even know that came out to support me. I was so happy that day.
My emotional and physical health has been dragging for the last 5-6 months. I haven’t been myself and I want to change it. With that being said, I’ve joined a new group at a place in our town called the Hope Center. It is a great place. It is a Christian based Cancer support group. It has helped me open up about my feeling and taught me that people do care and want to listen and help me deal with my emotions. They have a yoga/stretching class once a week that is free. I’ve been going for about 2 months now and absolutely love it! I even want to help volunteer. Going to the Hope Center has made me happy and has also helped my boys learn how to cope with mommy’s cancer. Since the boys are getting older now (10 & 7) they’re starting to ask some questions. I’m glad I can answer them with confidence! Thank you for reading the short version of my forever fight! J
Jennifer passed away on October 10, 2016.