Linda "Perserverance"
PHOTOGRAPHY BY RANDY BACON
I will never forget the words my doctor told me, “I would have never dreamed results like this, but you have a malignancy”. What started as a mild pain in my side ended up being the dreaded word cancer. Many were shocked as they told me I was one of the healthiest people they knew. There was no history of cancer in my family. Our lives turned into a battle to survive.
I wanted five children and we were well on our way with three little boys ages five, three and one when the pain in my side began. The older two started walking by 10 months but I was still carrying our youngest. I assumed I likely pulled something in my side while getting him in and out of his car seat. I was working full-time and extremely tired all the time but I never thought of that as a health issue. It was just the normal life of a busy mom!
The pain continued. My regular doctor knew I had a healthy history so we assumed it was muscular/skeletal related. He put me on a muscle relaxer and after a couple months the pain was getting worse instead of better. I began to feel a small knot just under my ribs on my right side and that was when all the tests began. For a month or so we were constantly running back and forth to the hospital.
It was not by accident that my customer friend David was in my office when I received the call from my gastroenterologist. I had told David at the beginning of our visit that I was expecting a call from my doctor's office in case the call came while we were visiting. During previous visits he had shared with me that his wife battled cancer some years back and she prayed that God would allow her to see their three children grow up. As a mom of three, I felt I could understand her prayer request. I was not even dreaming cancer at that time but somehow David seemed to know.
The call came and I excused myself to quickly take it. My doctor asked me to bring my husband and meet with him the next day. I was still oblivious to what was happening. David asked, “Everything ok?” and I casually responded, “Oh yes, he just wants to meet with us tomorrow to go over the results in his office.” David knew. He had been there before. Before he left my office that day, he strongly encouraged me to read the book of James. I’m so thankful God sent me that message for the strength I would need.
In the book of James, I read about counting it joy when you fall into trials and the testing of your faith producing patience and every good gift coming from above and submitting to God and humbling ourselves before the Lord as He lifts us up and not worrying about tomorrow. I read about suffering and patience and endurance and perseverance and praying for healing. God gave me everything I needed to be ready for the next day.
January 20 became my "survivor birthday." After I heard the word “malignancy”, I didn’t break down and cry, at least for the moment. I was in mild shock and felt a slight sense of calmness. I quietly asked, “So, now what do we do?” He went into the details of more testing and scheduling with an oncologist, surgery as quickly as possible, and six months of chemo. I started thinking about the boys and fought back tears as I asked if we should move up plans for future trips like Disney World. His response quickly made me realize that the dreams I had may never happen.
Linda and her sons
The hardest part was telling others, especially family. As I drove home that day, I remember thinking 'how in the world am I going to tell my parents?' The thought tore at my heart because I knew they would be very sad. For some reason, I was unable to reach them and my brother became the first in my family to know. He was a pastor in Illinois and he e-mailed over 200 others in the ministry all over the state to pray for his sister. He sent me back responses from missionaries in New Zealand and Australia that said they would pray for me!
As the news spread, the phone was tied to my ear most that night and I felt the boys were being a little neglected. I remember there was a lunar eclipse that evening and I let the boys stay up late to see it. In between calls, I took them outside to show them how amazing God is. As the calls died down, I sat in the kitchen floor with them and asked, “Do you guys know why Mommy has been on the phone so much?” Our five-year-old answered, “Yes Mommy, it’s because you want people to pray and ask God to fix your hurt tummy.” I nearly broke down...out of the mouths of babes and the faith of a child!
The plan was to get me into surgery as quickly as possible.The first tests were to find out exactly what type and stage of cancer. At that point, we knew I had cancer in my liver but the cells didn’t appear to have originated there.The next steps were an endoscopy and colonoscopy to test my stomach and colon. Things were moving very quickly and my diagnosis became Stage IV adenocarcinoma of the colon metastasized to liver.
My local colon surgeon told us because I was young and strong and healthy otherwise that instead of doing the colon surgery locally I should do both at the same time in St. Louis. He went on to say before I could have surgery, they had to scan my lungs. If the cancer had spread any further, the plan would completely change. Thankfully, my lungs were clear.
February 4 was surgery day and also our middle son’s 4th birthday. I had never been away from our youngest son and nine days in the hospital away from the boys made my heart ache terribly!
They removed half of my liver, gall bladder, a couple lymph nodes and part of my colon. My tumor marker, or CEA level, was used to track the cancer. Normal CEA is three or under. Mine was 4,923 when I was diagnosed. After surgery it dropped to 702. I remember looking down at the 32 staples the entire length of my abdominal area thinking 'wow is that really me?' My mom was with me every day and was a great source of strength and encouragement for me. I remember telling her at one point that I felt God was telling me it would get worse before it got better. She asked me how could it get any worse?
The last night in the hospital, the reality of everything up to that point suddenly hit me like a flood of emotions. I sat on the edge of my hospital bed and cried my heart out. Since the day I was diagnosed, I knew in my heart that God was going to take care of me. I quickly realized that taking care of me wasn’t a matter of living or dying but more a matter of holding me close whether I lived or died. That night, I wanted God to tell me if I was going to live or die. I needed to know. I was really scared.
As I sat there in the darkness, a sense of calmness came over me like a warm sensation pouring from my head and flowing down to my my feet. I felt very peaceful and heard the quiet words, “You are not alone.” I remember looking at the clock and seeing all ones on it. Since then, I have seen ones constantly in many, many ways and too many times to count! He often reminds me He is with me always!
The six months of chemo started out not too terrible then got worse. I went for five days in a row every month. I was glad when that part of the journey was over. I went back to work after six months and things started seeming a little more normal again. At least for a couple months. I remember asking my oncologist what would happen if the six months of chemo didn’t work and he told me he always had an “ace up his sleeve”. It was time to pull that card out. I also remembered that God let me know it would get worse before it got better. I needed to stay focused on the “better” part!
After the six months of chemo, my CEA had returned to normal but now it was climbing again. I started on chemo again. It was pretty harsh. I went every Friday for nine months. I dreaded going and did everything I could to delay it. Every Friday morning before work I stopped at the hospital to have my blood drawn. Then I would call back around noon to check to see if I was good to go and leave work early to sit at the hospital for a few hours. It got to a point where I could look at the IV bag when it was half empty and know it was about time to get up and go throw up in the bathroom across the hall. Many times I had to pull over on the long drive home as I continued to battle how awful it made me feel.
Eventually, my oncologist felt I should quit work and stay home and enjoy my family as long as I could. I was trying to keep my life normal but began to feel defeated. I looked up every scripture I could that had the word “heal” or “healing” in it and read them over and over. I had our entire dining room wall covered with cards from many people that sent me words of encouragement, some from those I didn’t even know that had heard my story. It was all so overwhelming!
During that time, I also had three separate liver ablations to burn smaller tumors in my liver. They were quite painful and I had to be awake for the procedure to breathe and hold my breath when instructed. One of the ablations happened to fall on our oldest son’s 7th birthday. The staff in St. Louis had gotten to know us quite well and treated the boys very nicely from the gift shop on that visit!
The second chemo eventually quit helping and I wondered if we had any other options. I remember reading one of my oncologists notes that said “spent a considerable amount of time counseling with patient and she is developing an understanding of her impending death.” It was a little scary but also made me want to fight even more. I wasn’t going to give up until the very end. I started planning things for the boys...who would make sure they got to church and who could help take care of them. I also began making audio tapes so they could hear my words to them as they got older.
A new chemo pill came out and I started taking it. First, eight pills a day, then six, then four, then two. They were zapping my white blood cells quickly and we had to keep lowering the dosage. I had to stay away from the public as much as I could to keep from getting sick. I had to go in for shots to build up what the chemo tore down. Fighting for my life was like a full-time job to me. Everything revolved around it and consumed much of my time.
After five months of chemo pills that eventually were no longer working for me, we ran out of options. For the first time, I got an “I don’t know yet” from my oncologist. I had grown quite fond of him and I trusted him. Early in my battle I had asked him if he believed in God and miracles and he said “most definitely”. We had to keep trusting God had a plan.
He decided to take me off of all treatments and let my body have a break. There was a new clinical trial for end-stage cancer that he thought I might qualify for but first it had to be approved by the board of oncologists in Springfield. Once the approval came through, I was placed on the trial. I was really hoping this test drug would work! I had surgery to implant a port for my treatments and the trial began. It was short-lived after having problems the first two months. My blood pressure went crazy! One morning I woke up and felt like one side of me was numb and my left eye was blurry. I was put on immediate bed rest and started on two blood pressure medicines. Other patients on the clinical trial had bleeding and blood pressure problems and a few died. The trial was closed.
My oncologist decided to talk with my surgeon in St. Louis about the possibility of doing a second liver surgery. I felt like it was our “last ditch effort” but also trusted them both to do the best they could for me. A couple weeks before surgery, I decided I really needed a nice peaceful calm day at the lake and was bound and determined to go water skiing. It was a crazy thought and took several tries to get my weak arms and legs to pull myself up but I finally did it!! I held on till I could no longer and thought that was the most beautiful sunset I had ever seen across the water!
Surgery day came. What was supposed to be a shorter six to seven day stay ended up being 12 long days after my right lung collapsed during surgery. My mom later told me the hardest part for her was when the surgeon told her they had lost me a couple times but I was stable at that point. They put in a chest tube for my collapsed lung. I got a fourth IV pole with a morphine drip because the surgery epidural did not cover the pain in my shoulder from my lung. I felt a little “wired” and couldn’t sleep and began pondering what the future might be.
In the wee hours one night, a nurse came in and said so sweetly, “Honey, why aren’t you sleeping?” I told her my shoulder really hurt. She was an older nurse and reminded me of Aunt Jemima as she came around to the side of my bed where all my IV poles were. She told me to lay back in my bed and close my eyes and I would drift off to sleep. She asked me if I believed God could heal me. I nodded yes. She told me in the book of John, Jesus asked, “Do you now believe?” and then she looked at me and asked me, “Do YOU believe?” I answered, “Yes I do.” She asked me if she could pray with me and I said yes. She placed her hand on top of my surgery area and prayed a very sweet prayer and I drifted off to sleep.
The next morning, I asked a young nurse who the older nurse was that came to check on me during the night because I wanted to thank her. The young nurse could not think of any older nurses that worked in that area. I asked two other nurses later in the day but no one knew who she was. Later I realized she was the only nurse my entire stay that did not write her name on the whiteboard, or check my vitals, or even look at my chart. I also wondered how did she know where to put her hand as she prayed? She simply drifted in, prayed with me, and drifted out again. It gave me goosebumps!
After three years of treatments and surgeries, I eventually received the status of “No Evidence of Disease” from my oncologist just before he retired. I still have regular follow ups and more colonoscopies and CT scans and lab work than the average person. I still have a “hot spot” in my thyroid area that shows up as suspicious ever since my original diagnosis. I think of it as a little reminder that God is still in control!
I have had the privilege of watching all three of our young men grow up and they are the joy of my life! I would have never dreamed the path that God would take me on since my diagnosis. I have been able to encourage other survivors in all different stages of their journeys. I've participated in Relay for Life since the first year it started in Springfield. Originally, I was just a runner and supporter, then I took the kids because it was fun for them. After I became a Survivor, I was honored to be a torch bearer the year I was diagnosed. It is something I support yearly for the celebration and connection it brings with other Survivors.
Each year I do something special on January 20 to celebrate my "survivor birthday." This year, I decided to celebrate by creating a bracelet that supports others also. It includes my aunt recently diagnosed with lung cancer, my Mom celebrating her one year with breast cancer, my best friend’s husband John celebrating a year with appendix/colon/stomach cancer and my friend Julie a few months into her battle with breast cancer. I feel very blessed to be on the supporter side for them!
I never dreamed back then that I would ever be able to take the boys on a couple wonderful family vacations and personally go on three missions trips to help others. During my first trip to Nicaragua, I was able to share my story with the ladies at the cancer center and offer hope and lots of hugs. Each time I hear of someone with cancer, my heart goes out to them and I feel very connected.
I am thankful that God allowed me to experience the joys through trials that only He can bring. I would encourage anyone going through a trial such as cancer to reach out to others that will pray and share positive thoughts and scriptures with you. Always believe that you do not have to fight the battle alone. It can get pretty lonely at times but there are so many out there like me that have survived and are more than willing to share their support and victories! I learned to quit asking, “Why me Lord?” and ask instead, “What do you want me to learn and do with this Lord?” Keep believing and surviving!