Hello, my name is Heidi Henion. This is Me.
First off I would love to tell you a little bit about myself, I am wife of a wonderful man named Ron and a mother of 2 boys Isaac who is 5 and Jackson who is 4. I was diagnosed with colon cancer on February 26, 2013, but to talk about when my story began we have to go back a little further. At age 12 I was diagnosed with Ulcerative Colitis (UC) disease a chronic inflammatory bowel disease. To say this was a scary thing to hear as a preteen girl is an understatement I was terrified. I remember clearly sitting in the room being told, I have a lifelong disease with no known cure and was told by my doctor that UC also increased my risk for cancer. Being a young emotional girl those words always stuck with me, “I could get cancer”.
The next few years of my life were pretty normal; I graduated from High school, started college and met the love of my life. I learned to manage my UC pretty well with a good diet and medications. When I hit my 20’s things changed dramatically for me, my UC literally took over my life. Ulcerative Colitis became a daily personal battle with things most of us prefer not to discuss with others. And for those who must deal with it, one thing is certain. It's horrible, it's overwhelming, and it's humiliating. I was sick constantly; I had excruciating stomach pains and constant diarrhea. I felt like my life revolved around finding the nearest bathroom. I learned to be thankful for the people God put in my life, my parents, my family, my friends and the person who became my ultimate cheerleader the man I know call my husband. I know without a doubt God blessed me with the most understanding, kind and patient man to stand by my side and I could not have gone through life these last 10 years without him.
Ron and I married in May of 2007 and found out a little over a year later that we were pregnant, this was not planned and we were freaking out to say the least. We did not think we were prepared for this, but God had other plans. During my pregnancy it became clear that my UC was going to make this pregnancy very difficult and it sure did. I was labeled a high risk pregnancy because I and my little boy were not gaining enough weight. Because of my UC and food going through me so quickly our baby was not getting the nutrition that he needed. They monitored him very closely and on Jan 28 2009 I had an emergency C-section at 36 weeks. Isaac Liam Henion was born at 4lbs 5oz. This was the most joyous day of our lives, but also one of the scariest. Other than being very small, having jaundice and having to learn how to eat Isaac was a healthy little boy. We stayed in the hospital for 9 days as Isaac gained strength and learned to feed on his own.
Fast forward 5 months and Ron and I found out we were pregnant again! I can’t even tell you how surprised we were, how could this possibly be? We were still trying to figure out the baby thing and learning to be parents when we learn we are expecting another?! After the initial shock we became excited to have 2 little ones so close together, and I was dying to have a little girl. Thankfully after having Isaac I was much more prepared for high-risk pregnancy number 2. They monitored me so closely that it almost gave me a peace of mind. Knowledge became power to me, and thankfully I was blessed with an extremely upfront and forth coming doctor. She actually scared the crap out of me my first pregnancy and I truly disliked her honest and blunt personality. But with my second pregnancy it became exactly what I needed, I wanted to know exactly what was going on it allowed me to be prepared for the situations that could arise.
At my 18 week ultrasound we found out we were having another boy, to be honest I was devastated. I wanted a little girl so bad, I love the relationship I have with my mom and I wanted to be able to have that with a daughter of my own. Deep in my heart I knew this was going to be our last child and my heart was broken. On the way home I was in tears, I told my husband “Healthy is what we want” I felt so guilty for feeling sad when I knew of so many other women who could not get pregnant. I cried for 2 days straight, I wouldn’t answer my friends calls I just needed time to process. After day 2 I really prayed and asked God to give to give me peace with having a boy and to fill my heart with as much love for baby boy #2 as I had for Isaac. I would be lying if I said I do not still struggle with not having a girl, but I have the blessing of perspective, I can look back now at what was, what is and what could have been and I wouldn’t change having 2 boys for anything.
The next few months were long and had there ups and downs. When I hit 28 weeks I was put on bed rest and had to go to the doctor every other day for ultrasounds to check my amniotic fluid. I needed so much support during that time, people helping with baby Isaac who yes, was not yet one and also taking care of myself and the baby growing in my tummy. I was hospitalized a few different times when the babies’ heart rate was too high, they wanted to monitor me and baby as close as possible. We were living life one day at a time, trying to make the best decisions with God’s guidance and the information that was given to us. I remember praying and just asking God to help us make it past Isaac’s first birthday, that would put me at 32 weeks and the baby would have a much better chance of arriving healthy. Isaac turned one on January 28, 2010 and against amazing odds Jackson was born 4 days later on February 2 at 3lbs 8oz. This day we also made of the hardest decisions of our lives, to have my tubes tied. Ron and I had prayed about it and we felt God had completed our family and it was not safe for me to go through another pregnancy, and my doctors agreed.
Jackson was completely healthy despite his small size. The doctors were blown away with this tiny little boys fight; he was always squirming and ripping out his feeding tube. The 2 weeks following Jackson’s birth were to date the hardest mom days of my life. I had this tiny baby at the hospital that needed me but I also had a baby at home who needed me too. I would cry every time I had to leave one to see the other and vis versa. Thankfully I had an amazing support system, my big hearted mother in law took a month off of work the 2 weeks before and the 2 weeks after Jackson was born to take care of Isaac. Ron and my family helped drive me back and forth from the hospital so I could be there for as many feedings as I could. At 2 weeks he was finally eating on his own and had grown to just under 4 lbs so we were able to take him home. Looking back that was one of the joyous days of my life; our newly complete family was finally all together in our home.
Isaac and Jackson had an instant connection; God planned them to be brothers to best friends, and I am so thankful for that. During the midst of hard days I know sometimes it is easy to question God, but I believe God uses those times to help build our faith. And faith is what I needed when I was confronted with the next obstacle.
Last February was a seemingly normal time for me; I was actually feeling really well. I had started on a new IV medication the previous year that had really helped my crohns. After many years of failed medications, I thought we had finally found a solution to helping me a live a somewhat normal life. At the end of February I went on a work trip to San Diego, which is one of my favorite cities. I had a time and was able to visit with my Aunt and Uncle as well. And in the midst of our harsh Michigan winters it was wonderful to get away for a few days and enjoy the sunshine. I came home on Friday and that following Monday I had a regularly scheduled colonoscopy as I do every year around that time to see how things are looking inside my colon. The last few years had been rough; there was a lot of scar tissue build up and very painful ulcers that riddled my colon. I was honestly looking forward to this colonoscopy because I was feeling better and I wanted to see how the medication was healing my colon.
My husband had to work that day so my mom came with me to the colonoscopy as she had to so many others in the past 16 years, it had almost become tradition a little mother daughter bonding time. I did the normal horrible prep stuff and went into the Metro facility where my doctor gave me some anesthesia and knocked me out for a little while, while he did the colonoscopy. I remember waking up groggy and the doctor coming in to tell my mom and I that my colon looked good, there was one spot they were concerned about so he did some biopsies and he would have my results back for my follow up appointment on Wednesday. I was thrilled, he said everything looked great; one spot was nothing, my last colonoscopy my whole colon was fully of ulcers.
Wednesday came and I went to work as normal, my husband and I work for the same company so I am lucky I get to see him during the day. We had planned for him to watch the kids that night and I would just go to my normal doctor’s appointment by myself. I received a call from my doctor around 1:00, I had missed the call but the voicemail said “Hi Heidi its your doctor, I just wanted to let you know I am looking forward to seeing you tonight at your appointment and I was hoping you could bring your husband along as well.” When I sat back down to my desk and listened to that voicemail my heart just sank, I couldn’t breathe. I knew immediately that something was wrong. I went to find my husband who was in a meeting and shared with him the phone call I received. He very calmly told me I was going to be fine, and He was sure it was nothing. I went back to work but I could not concentrate for the rest of the day; I called both of my parents a mess just asking them to pray for me.
The time of my appointment came and Ron and I walked into a quiet and empty doctor’s office. The nurse who I had built a relationship with from my many visits greeted us with a friendly smile and told me the doctor would be right out to get me. The doctor came out shortly and brought me back to an exam room, Ron and I sat down and he and sat down next to us. Wednesday night February 27 my world was turned upside down, I was diagnosed with Colon Cancer, the pathology report from the small sore spot they had seen in my colonoscopy came back positive. I was 28, married a mother of 2 and I had Colon Cancer. I felt like I had been punched in the stomach and I couldn't hold it together. Most of the next few minutes are a blur. Cancer, how could this be I was a 28 year old I cannot have colon cancer, that’s for old people. Anyone I had ever known with cancer had gotten extremely sick or died. God why? Haven’t I and my family been through enough? These were all the questions running through my head. The doctor proceeded to plow through what type of cancer I had and the next steps. Thankfully my husband Ron just asked him to stop, I was crying so hard I was not hearing anything that he was saying. We took a minute to regroup and then he shared what he thought was the best course of action for me. Ron and I left the doctors office stunned and a mess, my husband who is the least emotional person I know sat down in the car and started balling. I had never in our 10 years together seen him cry let alone ball like a baby. We drove home to our parents who were watching our 3 and 4 year old boys trying to figure out how we were going to tell them. We walked in to Ron’s parents house where the kids were thankfully watching tv in the other room and both sets of parents were waiting for us at the door. I fell into my mom’s arms and just cried.
We were given a lot of information, but I left knowing I had cancer and would need to have surgery to take it out, and they also were not sure if it had spread to or from anywhere else. They had already scheduled a CT scan for me on Friday and an appointment with the Colon Rectal Surgeon he thought was the best in state the following Wednesday. So the waiting game began, I had the CT Scan Friday March 1, and found out Sunday that the cancer was confined to the colon and was nowhere else, Praise God! I had an appointment Wednesday with the Colon Rectal Surgeon and he said the only way to get rid of the cancer is to completely remove the entire colon because of my history with Crohns. They wanted to take my entire Colon out and replace my rectum with a J Pouch, I would have an ileostomy bag for three months and another procedure to take it out and connect the small intestine to my J Pouch. I again fell apart, this is what I had been praying for not to happen since I was 12 years old and was diagnosed. Ron spoke with our work and they told us to take the next few days or as much time as we needed to figure this out, research, get second opinions and pray. We could not be more blessed with an amazing company that loves and cares for us both and our family. We knew this is going to be one of the most important decisions of our lives and we wanted to make sure we were doing the right thing. Through some amazing divine God connections we were able to get a hold of one of the leading Colon Rectal Surgeons at Cleveland Clinic the number one clinic in the world for the type of surgery that I was having, and also the head Colon Rectal Surgeon at Penn State. The Surgeons were fully confident in the decision of my surgeon here and the Cleveland Clinic Surgeon actually trained my doctor at the Cleveland Clinic on the surgery I was having.
I started a blog on March 11 to be able to tell all my friends and family what was going on, on a large scale because I knew it would be really hard to tell people first of all and second of all I wanted people to be able to share what I was going through and keep everyone updated on my journey. I had no idea what this blog would turn into. I did not plan for many people to read it, I assumed my close family and friends would read it to see how I was doing and share with their friends and prayer warriors. My first post has had over 1000 views and my blog as a whole has had over 15,000. The things people told me and the reaction I got blew me away. My small little personal blog and story was actually touching people, that was not my intention but it was God’s.
One of the verse’s that really became a refuge for me was Psalm 91:4. “He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.” I love the illustration of a bird covering its chicks with its wings. Being under God's wings provides such a picture of His protection to us. When a bird gathers her chicks under her wings when it is storming or there is something that has scared the chicks, they will eventually all calm down under those wings. Being under there comforts and settles those chicks when life gets scary for them. We know that under the Lord's wings we are able to trust Him. He's not going to fail us. He might not always provide and protect in the way that we'd choose but He has our best interests at heart. As a mother that verse touched me in such a powerful way, that closeness, protection, comfort, love and trust that we find under God’s wings are things we I strived to give my own children. We are so blessed that we can rest under God's wings in His love. To know He's always there for us to tuck us under those feathers. To know a true love that no one else can give us. I found security in making God my refuge in my time of struggle.
March 22, 2013 I had a total colectomy, they removed my entire colon and rectum, created the j pouch and left me a with a temporary ileostomy bag. I spent 9 rough and horribly painful days in the hospital. During my stay my pathology results came back, 12 lymph nodes are required to diagnose cancer. If any removed nodes test positive for cancer Chemo is recommended especially at my age. My doctor removed 55 nodes and 1 of those 55 tested positive for cancer, so he believed cancer could be in very small traces throughout my body. My Dr. recommended starting chemo in 4-6 weeks, so I would be mostly recovered by from surgery and my immune system would be doing better then. I would most likely have to be on Chemo for 6 months. My second surgery to reconnect everything would be another month after chemo was finished. Processing all of that was really quite hard, but my family had been by my side holding my hand the entire way.
I met with my oncologist a few weeks later and he suggested 6 rounds of a chemo regimen called FOLFOX. I went on a 14 day cycle, where I went in every two weeks for an all-day infusion of chemo and then I went home with an infusion pump connected to the port which I would leave in for 2 days and go back after those 2 days to have it taken out. At this point in my journey I had to really learn how to relax which was really tough for me. I am an active person especially being a mom and I rarely sit down when I am home so I had to learn how to just sit and rest and take help when it was offered to me. I was wrestling with a lot of emotions, a lot of which I had never felt and left me feeling like I was on an emotional roller coaster. There were moments of unexplainable peace where I was grateful for each day of life and as a result, I experienced a surprising joy. I committed myself to fight with all my strength against the enemy Cancer, finding strength I never knew I had even when I was experiencing a tiredness I never thought possible. Those emotions came and went, they were unpredictable, and often beyond my control. I knew my emotions were a gift from God, they allowed me to laugh and to cry, be happy be sad, and always lead me back to Him. It became so important to do my daily devotions and read about hope and knowing although some days look dark there is everlasting light in Him, and the more I put my hope in Him the more His Love-Light shines on me brightening my day. I knew that He would help and strengthen me with His Love.
I went through 6 rounds of chemo, the side effects were tough and I became extremely exhausted. I had many people ask how I could truly trust God during that time, this is what I shared with a friend. "I just think about the trust that my boys have in my husband and I, they know that we love them unconditionally and they don't question whether we will take care of them. They are not always happy when we tell them no or do things they don’t like to protect them. But that is the kind of faith that we should have in God our Father. God loves us and wants to help us with All our problems, big and small and although it is sometimes hard we need to let Him." When we entrust our cares to God, we are allowing Him to be glorified no matter the outcome.
I had my take down surgery in August, and have had multiple blood tests and CAT scans since then, everything has come back completely clear. I feel better and healthier now than I have in my entire adult life. I know that most people’s cancer stories are much different than mine, they went from living a normal life to having cancer, but honestly for me cancer has been the best thing that has ever happened to me. I now live a normal healthy life, where I can be a better wife and mom. I would be lying if I said this last year was easy or that I still don't struggle with the scars that are left behind on my body, but I know without a doubt God cured me and this truly happened for a reason.
Since the day I put my faith in Jesus as my personal Lord and Savior, He has blessed me immeasurably more than all I could think or imagine. My life has been filled with ups and downs especially regarding my health journey but he is always giving me strength and peace when I am weary.
Throughout it all He has renewed my strength to face each new day. God has a lot more to teach me, some days it felt like a lifetime until it would be over but I now can look back with clarification and know this has only made me stronger. Most of all I could not have gotten through all of these times without the support of my husband, our families and friends but most importantly God. Sounds so weird (and perhaps absurd) to say this, but if I could go back and change things, I don't think I would. I love where I am now and who I've become and who I've befriended, my relationships are authentic and I live in the moment not worrying about tomorrow. Cancer was not an ending for me, it was only the beginning and no matter how my story ended I could be joyful because I know where I am going and that’s to spend eternity with Jesus. You may be hearing my story today and a health is not your struggle, but I know we all have struggles big and small. I just ask that you consider giving your heart 100% to God and put all trust in Him. He will give you a peace, joy and purpose that you have never know before. I am not saying it will always be easy but with God there is always hope and you will never be alone.