Friday, June 24, 2016
I've been asked to share this in a format other than Facebook. Several people have asked for another way to view it and Rich has asked me to make it available to the church. I'll start in the blog world and go from there!
I'm finally getting back to rewriting my post from earlier in the week. We've been on the road so I'm just now getting a chance to put my thoughts together. This is a very long narrative and may be more for me than anyone else. Feel free to ignore it or share it with someone who may be traveling a similar road.
Six-and-a-half years ago, I found out I had Stage 4 Head and Neck Cancer with an unknown Primary. That, basically, means that it spread into my lymphatic system, but they were unable to pinpoint the source. Two exploratory biopsies and a tonsillectomy later, that was still the case.
I was referred to Vanderbilt Ingram Cancer Center and my "team" developed a plan of treatment that consisted of 9 weeks of Chemotherapy followed by 7 weeks of radiation combined with Chemo. Fortunately, I was able to get treatments in East Tennessee.
During my 9th Chemo treatment, my body apparently decided it had had enough. I had an anaphylactic reaction to the Chemo and was rushed to the hospital. A bolus of Benadryl, 2 shots of epinephrine in the ambulance and 1 more in the ER left me with the worst headache of my life and a new appreciation for paramedics!
We, obviously, had to rethink the chemo I would receive during radiation. Once I had recovered, we went to begin the radiation process. Since my cancer wasn't localized & we didn't know where the Primary was, the best course of action was to radiate the entire area in hopes of treating all possible affected areas. This meant that I received radiation, basically, from the middle of my ears to the bottom of my collar bones.
In order to make sure that the radiation covers the desired areas, they create a mesh form that conforms to your upper body shape. Then, when you go in for treatments, they fasten you to the table using the mask to hold you in place. I'm slightly claustrophobic. Being pinned down for a significant period of time is nerve-wracking to say the least! I spent my time praying! I had a significant prayer list at the time and I worked my way through it each day. Janie's nephew, Zach, was undergoing treatments at the same time as I was. I spent a lot of time lifting his name up as I imagined what a young man and his family must be going through.
I had 2 chemo treatments during radiation. After the second, I noticed an incredible amount of tinnitus (ringing in my ears) and significant loss of sensation in my extremities. I reported these to the Oncologist and she, along with my team, decided to discontinue chemo altogether rather than risk more substantial damage. I still have a constant, very loud, ringing in my ears. I try to keep background noise to make it less distracting. My fine motor skills have been impacted by the peripheral neuropathy caused by the chemo. I'm thankful they discontinued, because the effects were, obviously, irreversible!
Stating the obvious-- radiation cooks you. After about 2 weeks, the pain & swelling were significant. My salivary glands quit functioning completely about week 3. Since my throat was a primary area being radiated swallowing was difficult. I had a PEG tube inserted to allow for liquid food to go straight into my stomach. This tube literally saved my life! I was able to get a pump which slowly fed me at night while I slept (in my recliner). Even with supplemental feedings, I dropped 50 pounds from my pre-cancer weight. I never stopped trying to eat. I had been told that if you quit swallowing it is hard to retrain yourself. Ramen noodles were my friend! There's as much sliding as swallowing when you eat them!
After about 6 weeks (30 treatments) of radiation, my skin had broken down to the point that they made me stop treatments for 10 days to let my body recover a little. When we restarted, they added a few more treatments. I ended up having a total of 42 before I was finished. I drove myself to every treatment and had the road to Morristown Hamblen memorized forward and backward! I met many incredible people in that waiting room and was reminded again of how many people we know who are battling cancer.
I continued to fight the effects of my treatment for a significant amount of time after it was over. My first milestone came when I ate meat at my Niece's wedding in New Hampshire in May. Flying with a feeding tube and accompanying apparatus is an interesting experience! I also went to the beach that summer and invented a saran wrap and tape system to seal my tube so I could play in the ocean.
I had to wait until late Summer to find out how successful our treatment had been. We knew the lymph node had shrunk, but had to wait for the inflammation caused by the radiation to diminish before we could have scans done. When we finally got them done, we heard the words we had been praying for: No Evidence of Disease (NED)! I had been told that this was as good as it would get because physicians hesitate to say, "cured," because they fear a relapse could occur and don't want to be held responsible for getting hopes up.
In late October, I got my feeding tube out and we started an every-3-month schedule of CTs and scopes. After the 1st year, we still saw Drs every 3 months but alternated scans and scopes so that we had both every 6 months. After 3 years, we moved to Drs and scans every 6 months. After 4, we moved to an annual visit.
That brings me to last Thursday, April 14th, 2016. We went for our 1 year follow-up with my medical oncologist and my ENT oncologist. We got great reports from both regarding my condition and then heard something I really wasn't expected to hear: "As far as we and Vanderbilt are concerned, you are CURED!" Any further follow-up will simply be for peace of mind! Praise God!
So, why this incredibly long narrative? From Day One until today, I could not have made it through this journey without my family, friends, church, and faith. I went into this experience pretty fresh off of losing my mother to non-small cell lung cancer. I had watched her battle and I had no delusions that my faith would guarantee my healing. However, having watched my mother faithfully battle, I knew firsthand the peace that can only come through belief.
To put it simply: My faith in God allowed me to face whatever came my way without having the need for answers hanging over me all of the time. I believe that God is sovereign. I believe that He is loving. I believe that He, most certainly, can heal. I know that healing doesn't always occur. I could stress over the whys or I could bask in the knowledge that I was in His care. I chose the latter. Some would say that I was operating out of willful ignorance. I say that I acknowledge my ignorance of His ways and choose to trust Him to guide my paths!
Today, you or someone in your circle of friends is facing a huge battle: physical, emotional, relational, fiscal, or many other things the world throws at us. I pray that you will seek the face of God and the comfort and peace that comes with laying our cares on Him.
The most important commandment, according to Christ, is to love the Lord your God with all your heart, soul, mind and strength. I believe that this commandment equips us for the second most important commandment: Love your neighbor as much as you love yourself. When I have given all I am to my God, I am no longer living in the world of ME. Knowing that he has me covered, I am able to see more clearly where I need to be loving my neighbor more. I firmly believe that God helped me dwell less on my situation and developed a much more keen sense of empathy to those who were fighting battles of their own.
I close by simply encouraging you to share your stories of faith and triumph. We are not made solely of our successes or our failures. Our lives are a story that is being written minute by minute. I encourage you to choose your co-authors carefully. I am glad to say that I have chosen God as my co-author and He has surrounded me with an incredible "Cast of Characters" who have made my life a joy, even through the trials. I still can't spit. I'm missing teeth. I have tinnitus and peripheral neuropathy. But, I am here and I HAVE to tell my story. I love you, my friends and family, and I pray that the Spirit of God guides you as you journey!