Recently I was chatting with my friend Lane on Facebook. He was talking about how often I post comments and pictures about what’s going on in my life. I responded by saying, “yeah I guess I’m sort of an open book. My friend said, “An open book? You’re more like the Chicago Tribune!”
I have no defense, he was right. I wasn’t always the Chicago Tribune, but then I got cancer and everything about who I was changed and I am now more than ever compelled to share my story, my joys and sorrows with those I love.
I am a Cancer Survivor. It is forever a part of who I am these days. But, I am more than just a Survivor. I like to think of myself as a Warrior. My being a Warrior doesn’t always mean I am in battle, or that I’m going to win my battle. What it does mean is I am always on guard. Keeping watch and looking for signs of the enemy’s return, but also trying to live my life not only fully, but fully in the moment and standing with my fellow warriors.
It means holding a hand, giving a hug, and telling someone I care. It means sending a card or just listening to someone else’s story. It means helping them fight their battle. It means not only crying with them, but laughing with them too! Tears and laughter are both needed. And sometimes holding their hand means telling them its okay to let go when they just cannot fight any longer.
On a Friday, August 27th of 2004 when the nurse called me into the Doctor’s office, I told my husband it was okay, he didn’t need to come in with me. My Doctor came in almost immediately, sat down in front of me very close and looking at me directly, he told me very quietly that I had cancer. Deep inside it felt like I had been punched in the stomach.
My journey had actually started several weeks earlier, when I was blindsided by my Mom telling me, she had cancer. How could this be? Mother and Daughter diagnosed with two different types of cancer just weeks apart from each other? It was HOWEVER quite possibly due to my Mom’s cancer that I even took note of the small lump I felt inside my neck. I cannot be certain that I would have acted as quickly as I did to have it checked out. I had no other symptoms to tip me off.
The cancer was in my right tonsil and had spread to the lymph nodes. I was Stage IV. My youngest son had just turned 2 one month before. My oldest, had just 2 weeks earlier started her first year of College, and my middle child a 16-year-old boy with a learner’s permit all had to figure out how to deal with this next cancer diagnosis. My husband and I had just celebrated our 20th Wedding anniversary just 2 days before this sorrow filled diagnosis.
All I could think of was my husband sitting out in the waiting room, still hanging on to hope, because he hadn’t heard yet and I was thinking maybe I could just let him sit there awhile longer, but of course I couldn’t. Before we left the office that day I was scheduled to have my tonsils out on Monday. I had the weekend to do nothing but think, cry, pray and prepare my “In Case I don’t make it” notebook.
I wanted to be prepared and organized. I wrote letters to each of my kids and my husband. I wrote down songs, poems, and Bible verses for my funeral, and in the letter to my husband, I wrote down the name of a female friend of mine that I wanted him to start seeing after my death, because I knew she would love my baby boy, just two years old. I didn’t really care if my husband liked her or not!
During this most sorrowful time I wanted to be organized. I wanted to have everything in place for everyone who was left in the aftermath, so they would have an easy time going on with their lives, without me. I guess I didn’t think they could plan a funeral as well as I could!
The tonsils came out, my throat had to heal. I had to have a feeding tube put into my stomach. I was told the treatments, both Chemotherapy and Radiation would be very harsh and it was best to have the G-tube in place while I was still healthy. I had to see my Dentist and I had to be fitted and measured for a mesh mask that covered my head and neck for the radiation treatments. While I had my treatments this mask, with my head in it would be screwed down to the table. I guess they wanted to make real sure I didn’t try to run away.
It was October before I could finally enter the hospital for my first round of Chemo and Radiation. By then the lump on my neck was visible to everyone and about the size of a misshaped baseball. I entered the hospital on a Monday, was discharged on Friday and on Sunday I was being rushed by ambulance back to the hospital’s emergency room, where they worked on me to save my life.
I talked to God that night; I knew he was there, but I was oblivious most of the time to everyone else, including my 16-year-old son who had come along with my husband, it was weeks later when I realized my son had been there too, that’s how close to death I had been. It took the staff 6 hours to get me stable. I spent a week in Intensive care where my kidneys came close to shutting down and spent another week back on the Cancer ward. That was just my first round of treatments.
By the time I was back on the cancer ward, my lower extremities swelled so badly with fluid that my legs weeped continually. My throat was so scarred I could no longer speak above a croak. I had stopped eating, because I couldn’t call the hospital kitchen to order a meal. Through it all I would lose 52 pounds. I would NOT recommend the Cancer Diet.
Once out the hospital, I had to go back daily for the radiation treatments. I went back in the hospital for a second round of chemo several weeks later. I was in very bad shape. The only time I left my couch was to try to make it to the bathroom. The only time I left my house was for my radiation treatments that someone had to drive me to. Bright lights hurt my eyes. The sound of the TV or even people talking softly physically hurt. I couldn’t lay down, so I would sit, with my knees pulled up leaning against the side of the couch all day and night.
The radiation treatments were shutting down my salivary glands. All my nourishment was going directly into the G-tube. I was extremely weak; sleep was almost non-existent, although I pretended to be asleep a lot to make everyone leave me alone. The diarrhea and vomiting would come on without any warning.
The 52 radiation treatments I had scared me the most. I could not sit up until someone unscrewed the mask from the table and I was fearful of getting sick or choking. It happened once and I was grateful and surprised how quickly the nurses could run in and get me up. The treatments took about 20 minutes and I would lay there trying to calm myself from the claustrophobia and the scariness. I would pray over and over the Lord’s Prayer. It was the only thought process I could hold, as I watched through the mask the machine move around my head. I think now of that song Sheryl Crow wrote about her cancer and the radiation machine and I think, yeah I know it was tough for you, but a least you didn’t have your head screwed to the table.
I spent a lot of time talking to God. I know I wasn’t always too nice in my conversation. It wasn’t so much anger as it was just scared, and God was polite and listened without interruption until one night in my misery I was thinking maybe death wouldn’t be so bad after all. I was talking AT God and I was NOT happy, and God decided to stop being a good listener and nudged me instead. The question came to me, would I rather this was my baby, my little two-year old? Well, that was the kick in the pants I needed. This child was my HOPE. I had to survive for him. I will admit however that I didn’t jump right up off that couch that night, but my attitude did change.
It took several months, day by day, minute by minute for me to finally feel myself getting better. My Mom and husband had been there with me, caring for me. I had a network of friends praying for me and loving me, and a few supporting me by driving me to my treatments. My friend Lydia cutting my hair short when my husband couldn’t bring himself to do it and Virginia getting after the nurses when I was having a particularly harder day than normal, all of these friends helped to make me feel so loved, and almost every day it seemed a card was in my mailbox.
Although the whole ordeal for both my Mom and I had been quite different, we were both facing the same question, what now and how long? Through it all we became buddies, spending more time together. Through the worst of our battle Mom kept telling me, next year you and I are going to walk that Survivor lap at the Relay for Life! We’re going to be there! We’re going to make it and walk it. She just kept telling me that. We had never been to Relay, but we had certainly heard of it. So that became our one and only goal. Get to the Relay for Life the summer of 2005. We walked that very first Survivor lap with me bawling my eyes out and my Mom with such a huge grin, her face almost couldn’t contain it. We show our joy in different ways.
By the time I hit the two-year mark of my Survivorship I was amazed that I had made it that far. I was so overcome with thankfulness that I threw myself a party. I called it my Celebration of Hope. It felt a little funny throwing myself a party. I was suffering from Survivor’s guilt. Cancer had taken so many of my family. But I was compelled to do this. It was about me having a chance to celebrate life with my friends and family, giving me a chance to hug each one of them. I told them it was a party for me to stand with them and laugh, instead of them standing over me and crying, the party before the “gathering”. I was amazed that after two years there were still tears to be shared. I was overwhelmed and shaken. That night I laid in bed, looking back over the hellish battle of cancer. I wanted to pull the covers up over my head and cry, to cry once again tears of joy for the strength of all my loved ones who stood beside me and helped me fight and were here to celebrate this victory. It felt so great being able to share a hug or two or three and telling everyone just how much I loved them. It felt so good that 4 years later when I turned 50 I knew it was another good day to celebrate life. So I threw myself a “Surprise” 50th birthday party. What fun! I got a lot of mileage out of that joke!
We should never miss the opportunity to have a party. Not because it makes us the center of attention, although that’s great, but because it gives us the chance to tell our family and friends just how much we love them, it gives us a chance to share a hug with those we love. It is opportunities we should never let slip by. It felt so good to laugh at the silliness of the day and again hope was on my horizon.
A few years ago I was asked to speak at the “Fight Back Ceremony” at Relay for Life and tell my story. But afterwards I kept thinking about those words “fight back” and I thought what am I doing to “fight back”for me? I know I’m fighting back for all of us by raising funds, but what am I doing to fight back against my cancer. Throwing a party was great to tell everyone how much I loved them, but I needed something more for me, to stop being a victim to cancer and what I thought I couldn’t do.
It took until February for me to come up with a plan. I’m a slow thinker, but, I knew I was so much more than my cancer diagnosis. So many people talk of their “bucket list”. Have you seen that movie? I hated it. It really made me so very mad. To me it seemed as if the only way one could find joy was to spend lots of money and travel the world! I would love to do that, but let’s be realistic, I can’t afford ia trip to Indiana, let alone around the world and I’m sure many others can’t either. They made it seem as if this was the only way to enjoy life. It SO is NOT true.
When I finally do stand before my Maker I’ll be honest, I hope He doesn’t say to me, “Hey great job doing those dishes all these years!” My dishes are not my priority. If you come to visit me your bound to find not only some dishes on my counter, but some dust on my furniture. I am out trying hard to live this life God has blessed me with, and finding joy in the little things!” Like making time to get ice cream with that little baby that’s now 10 years old and since he’s a boy we talk about boy things like,“Mom, what do you think deer poop looks like?” Yes, this too is joy. I’m here for him to talk to me about anything he wants and have ice cream! I also found joy at the age of 50 going to College for the first time. I earned my Library Technical Services Certificate last May.
Anyway back to that Fight Back speech for Relay, that following February my daughter and I joined a fitness center. I started walking on the treadmill. When the weather turned warm we headed outside, My daughter running and me doing quite a bit of walking, but trying to run. I was doing a lot of huffing and puffing more than anything, but I got this crazy idea for us to compete in a 5K race that summer. There were days, while I was trying to run, with my lungs screaming at me and each step a struggle, I questioned myself constantly. My mind would race back and forth between “what on earth am I doing this for, to COME ON just put one foot in front of the other, till I reach that next mailbox. I knew this was not an easy quest. I was almost 49 years old and had NEVER been a runner. I could barely run to the mailbox without heaving and now I thought I could run a 3 mile race. There was one day I reached my breaking point. I felt like a worn out old dish rag. I cried and boy did I feel sorry for myself. I had a little pity party, but then I started to ask myself what the problem was? I should be proud of what I had accomplished. I should be filled with joy! Wasn’t this better than being balled up in the fetal position on my couch when I was going through treatment? I was out running. Even if it was mailbox to mailbox, wasn’t that far better than running to the bathroom to throw up? It wasn’t about winning the race; it was about just doing it and crossing the finish line. If that meant running, walking or even crawling what did it matter? The fact was I was far more fit than I had ever been in my life, let alone when I was close to dying. It wasn’t about the WIN, it was about the FIGHT. This was ME fighting back! So I kept it up and made improvement. My daughter and I ran that 5K. I was slow as a turtle, but I ran it and crossed the finish line. I bent over catching my breath and realized I had done it. It was hard but I did it. I had a few health setbacks and that was the only race I competed in that year, but the next year I was back at it and competing in more races, sometimes by myself and sometimes with one or more of my kids or friends. You see, for ME fighting back is MY battle. I might have a break or a set back here or there, I might have to change-up the game plan, but the fight remains in my mind to live my life as fully as I can and to have joy doing it.
I don’t have a “bucket list”. I have a “to do” list. It’s all over the door at my house that leads outside those walls. On it you will see what I want to do, maybe I won’t get it done tomorrow, maybe I won’t get it accomplished before I die, but I won’t give up trying to accomplish these things.
Last year was another tough year; my running took a back burner to my Mom’s health. We participated in our 7th and last Relay for Life together, not walking together but me walking behind my Mom as I pushed her in a wheelchair. She was too weak to walk. She knew it would be her last Relay for Life and she wasn’t about to miss it. She had raised her goal of $1000 with a lot of help from family and friends. She knew just how much that money would help other survivors and the cost of research. She wasn’t about to miss the party that celebrated Cancer Survivors and their caregivers. Her hope and mine is that one day this money will keep us all from hearing the words, YOU HAVE CANCER!
7 years after we started this battle together, my warrior Mom died on August 2nd. I sat beside her, rubbing her hand and telling her it was okay for her to leave us. My daughter and my Dad were on her other side. The Hospice nurse at the foot of Mom’s bed. My 2-year-old baby now a 9-year-old adolescent stood just a few feet away watching with my cousins. We all watched, and waited, and let go of her as she stepped over the threshold and took God’s hand, to walk the rest of her journey by His side, instead of ours. So much for a young child to see and live with since he was 2 years old. My Mom had one Hope 7 years ago, she wanted to live long enough for that little baby boy to remember her. He will never forget her.
After Mom’s death I wanted to start running again. My daughter and I signed up to do the Warrior Dash. It’s a 5K run with about 15 hard obstacles to get over, under or through. I was so bad from my lack of activity over the months I cared for my Mom that my daughter had to trot backwards just to stay with me and many times I was the cause of her stopping and waiting and walking and more importantly pushing my butt over a high wall I had tried twice to get over on my own. We all need a little help sometimes on this life journey. I made it to another finish line, running, walking, crawling and being pushed over a wall. I signed up for that Warrior Dash again this year, but in my grief I‘ve had trouble focusing on training. It was difficult. Then a friend of mine lost her 24-year-old son. Although it wasn’t due to cancer it was tragic. Jill found her son Andrew’s “to do list”,153 items in total and she has posted these items, one each day on Facebook and her friends and family are working to accomplish Andrew’s list, in their own way, even things that Jill knows he had accomplished. People are stepping up to say, Yeah, I’ll do that one! I believe it helps my friend, to heal from her grief. One of Andrew’s “to do” items was to run 50 miles. He had accomplished this all in one race, but now I am doing it in his memory, one mile at a time. It is helping me to heal in my own grief and bringing back my joy, living my life fully in the moment.
I have survived and through it all God has been there, holding my hand. It hasn’t always been easy; there have been tough days, tough hours, tough minutes. Sometimes I need to be reminded of joy and living fully. Sometimes I need to be reminded that God is still holding my hand. I have a small plaque by my desk that helps remind me, it’s from Psalm 46:1 “God is our refuge and strength, a very present help in trouble’. God is MY refuge and strength, but so are my family and friends. I hope that I too have been strength to my fellow warriors on this journey.
I am a Warrior. Fighting my own battle and trying to help those I love fight theirs. I will be at this year’s Relay for Life. I am working hard to make my goal for the 8th time. It will be my first Relay without my Mom beside me. I will walk the Survivor’s lap without my Mom. It’s going to be tough, and I know I will cry, but tears are good, they cleanse my soul and I will not be alone. God will walk with me and so too my fellow Cancer Warriors, some who have battled so much harder than I. I wouldn’t miss this year’s Relay for Life for anything. I walk in honor of all who are doing battle and I walk in memory of those no longer standing. It is an opportunity to cry and hug and laugh with everyone there who has been touched by cancer and I won’t miss this party! I don’t want to miss the joy of living fully in the moment. I encourage you and challenge you to come to the party. Don’t miss out on living fully in the moment.
My name is Jerri Lynn. I am a Warrior. I’ve come through the fire. I don’t know what lies ahead but there is HOPE. Thank you for letting me share my story with you.
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