What I had wish I had known before my brain was diagnosed with cancer.
Survivor with a Smile
My senior year of college had just started, and I started getting headaches just about a month in. At first they were seemingly small, like just regular type headaches. Soon I was missing more classes than I could afford, and I was having them every day. They were intense. I tried everything in the books to get rid of them, nothing worked. People kept telling me that I was overly stressed and probably drinking too much caffeine, though I’m not a huge caffeine drinker. I just assumed I had fallen victim of those “dreaded migraines.” I never bothered to go to the doctor.
I graduated, somehow, on time, but they continued to get worse. Over the summer while I was counseling at camp, I noticed my memory was terrible. I was leaving and forgetting things all over the place, which is so out of my character. Especially being a counselor. I was jumbling power points and going completely blank with many things.
I didn’t really start to think something was wrong until a couple months later. The headaches were through the night and day. I couldn’t escape them, and I was losing my ability to function day to day. A year after I started having headaches, I finally went to the doctor to get migraines meds. She listened and said, “I think you need to have an MRI.”
Five hours later she had called my house phone, but I had missed the call due to my grandparent’s 50th wedding anniversary that weekend. I didn’t get the message that I needed to call her until Sunday night. Little did I know, this was the start of a journey I didn’t think I was ready for. She said I had an abnormal amount of tissue on the brain, along with some lesions on the different lobes, but she couldn’t be the one to diagnose it. I wish I would’ve realized how much the Lord was going to protect me in this journey, that first phone call being one of them. My family was able to gather and enjoy each other without having to worry about what the answer on the other end of the phone would be, until after the weekend festivities were over.
I wish I would’ve known about the journey ahead. We made it to a neurologist, and he hardly looked at the scans and sent me on my way with medicine I said made my headaches worse. On to a new neurologist we went. It wasn’t until a month after my original results that I was officially diagnosed. On October 22, 2013 I was diagnosed with a brainstem glioma, and possibly MS on top of that. This diagnosis rocked my world. I wish the doctor would’ve been clearer in my specific type on the phone, and I wish I would’ve stayed away from the internet in the waiting period to see the doctor. My life was changed, more positive ways than negative, but nonetheless, a mountain had formed in front of me I knew I had to climb.
I didn’t know how this journey was going to change me or the patience and endurance it would require. The seemingly endless poking and prodding of needles, the hospital gowns, the early mornings and late nights. It all seemed unbearable, but I would receive letters stating how inspiring my story was and how I changed their outlook on life, all because of my faith through all of it.
I wish I would’ve known how loved I am. That I matter. I have a wonderful family, friends, and a fantastic church family, but yet I didn’t really understand that I was loved and cherished by so many. I don’t think I even really fully understood HOW MUCH GOD LOVES ME. I matter in this world. As word got out that I had been diagnosed with brain cancer, letters came pouring in. Flowers were being sent, I was getting little goodies in the mail, care packages – and messages on Facebook from people I didn’t even know saying how I inspired them and how I helped them in their walk of faith. I was overwhelmed with love and God had shown me how incredibly blessed I really am.
My value doesn’t come from man, but from God, and I wish I would’ve grasped and understood this without having to have cancer. If I’m honest, growing up I had some very dark moments where I questioned if my life was even worth living. Cancer changed that outlook forever, every day is a gift and a blessing, not a burden.
I wish I would’ve known how God was going to use me through this. I do not believe that God gives people cancer, or other terrible diseases. I truly believe this is a cause from the fall of man that goes back to the Garden of Adam & Eve, the world became broken. What I do believe is that God can take something so horrible and use it for His good. From the first phone call there were lots of tears, long nights of anxiety and wondering and questioning if I was going to make it. Am I going to live long enough to get married? Let alone get a boyfriend? Am I going to live long enough to go to grad school? Long nights of wondering what I wanted to leave behind to those I love most.
I decided from the beginning that I was giving this to God. That no matter what happens to me, I want God to get the glory, and I want Him to use this in whatever way He wants, even if that means losing my life. I became a better friend, a better daughter, a more forgiving and loving person, and I wish it would’ve happened without cancer.
God has used my cancer to reach and inspire others. I have had relationships repaired and friendships restored. I never thought in a million years my relationships would be where they are today, and I didn’t know God was going to use my diagnosis and softened heart to repair them. I’ve had friends come to me wanting advice on how to talk to friends with a recent diagnosis, I’ve been able to encourage and show compassion to those who have just started the same journey. I’ve been blessed to be able to shine His light through such a dark and scary illness. God softened and changed my heart and I’ve never had a stronger faith than I do now.
I wish I would’ve known that God does give you more than you can handle. For all of my spiritual life, I believed God didn’t give you more than you can handle. I was even guilty of telling people such things, though I’m not sure I ever believed it, but I thought it was true. After being diagnosed, I realized I was in way over my head. I have to do things that are only in nightmares, and I quickly realized this is too much. I am overwhelmed and I can’t handle this – on my own. The hospital visits, the long days of being in pain, the spinal tap, unable to work at an age where I feel as though I need to be working, all of which is too much. It didn’t come easy, but I learned that in this world we sometimes get more than we can handle, but God will be there to equip us and guide us to get through it. The passage where it says that His yoke is easy and His burden is light is there because God KNOWS that our burdens can be too much to carry, but gently reminds us, He is big enough to handle anything. God has allowed me to carry more than I can handle, but He is always there before me paving the way and holding my hand.
I wish I would’ve known how to live life to the fullest before the diagnosis. I never realized how much I was missing in life until I heard the word cancer. It’s a scary, mean word, and it really makes you step back and look at priorities. I no longer live in the future as much, or go back to the past, but I stay in the moment. Every second counts, every precious breath, every smile, every beautiful sunset, is a blessing. Less worry and more doing. I wish I would’ve been living like this before I was diagnosed, but I wasn’t, and at times I still don’t, but I am learning each day to take it as a gift, a beautiful gift.
I wish I would’ve known how painful this journey really is. I remember vividly my Grandmother’s vicious battle with breast cancer, and mine has not been remotely close to such battle, but it certainly has been far from easy or pain free. I have had horrible headaches for over a year, almost two now. I thought when we figured out what was wrong we could get rid of the headaches, but that was far from the truth.
All of sudden I realized, I really am sick. We tried so many medicines, I can’t even count. Some that made me cry for no reason, some that made my skin crawl, and some that made my head hurt so much worse all I wanted to do was bang it against the wall. My memory was bad enough without medication, but another made my memory absolutely terrible. I have always been someone who can remember all the kids in the classroom’s name after the first day or two, now that is out of my ability. Medicine that made me lose so much weight I literally felt weak. I remember looking in the mirror and telling myself that I hated looking so sick. My appetite was gone, food tasted different. I would try to drive to a place I’ve driven countless times before, and I would get lost. I had to hand my keys over to my friends at times so they could drive for me. Medicine that made me angry and moody. I felt trapped and I knew this wasn’t Kaitlyn, but yet I couldn’t change it. The countless blood work with the many times I almost passed out, the blown veins, the kinked lines, the burning and electrocuting pain of the spinal tap. And nobody ever tells you how exhausting it all is. The bubble in the back of our heads that I could also have MS on top of cancer.
It’s not easy. It’s difficult and trying, but I have hope. I have confidence that God won’t stop working in me and through this. I wish I would’ve known how much strength I had. “You never know how strong you are until being strong is the only choice you have.” Things have been looking up, more answers have been pouring in, and I am finally going to be able to go back to work. I wish I would’ve known how drastically my life was going to change. God is good, and He will continue to orchestrate whatever is best, no matter what the final outcome.