Last evening, three women shared their health experiences in a community forum. The focus was on how they felt God had intervened in their care and helped them medically, physically, and mentally through these trying times. Suzanne was one of the presenters. Nervous that attendees would not be able to understand her, Her presentation gave her the chance to explain what she went through in her words.

So today, it’s her turn. She wrote out her talk in case no one could understand her and I had to assist, but as it turned out, the vast majority were surprised at how well they heard her thoughts. The following is her prepared remarks.

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Opening Prayer – Thank you Lord for all these people in attendance. Please help me to speak so they can understand. Give me the words to honor you and show how blessed I have been with your love.

When I knew I was going to Chicago to live for 7 weeks a friend sent me 2 Bible verses to read each day.

John 14 : 27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Isaiah 41 : 10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Both of these say do not fear or be afraid, but I was scared out of my mind. Because of covid, I listened that week to our church sermon over the internet and it was this same topic. I wrote pastor Lewis, “Is there something wrong with my faith? I am scared” He told me it is only natural for me to be scared. Just don’t let it take over my every thought. Move beyond that. That was the words I needed to hear that day.

On the first day of chemo, I was told I would lose my taste in the next week. By the second week, fatigue would set in. On the 3rd week, I told my Dr. I went to Mexican the day before and it tasted wonderful and walked 3 mi. He told me he would not try to tell me what I should expect anymore since I wouldn’t do it anyway.

Radiation was five days a week, strapped into my head immobilizer I named Beverly (named after our billing contact at Rush), all alone for 15 to 20 minutes. In my head I talk to God, said the Lord’s prayer, and recited the verses I was sent. Before treatment would sit in a room with other patience getting the same treatment. They all had burns, were sick, and couldn’t eat. Some had to stay in the hospital before returning to treatments. We all prayed for each other and tried to be each other’s cheerleaders.

I put creams on my neck four and six times a day, drank, and ate what I could. Toward the end of treatment, they asked me to stop eating chips and things that would scratch my throat. I started to eat softer and softer food all the time. The outside of my neck never burned and my doctor said I was in the top 1% of how well I did with radiation. God was with me.

Before my surgery, I was told I may never speak again, so I recorded my voice in a voice bank somewhere on the internet for my future use. (John Plays recording: “Good evening. Thanks, everyone for coming to see how God has worked in our lives.”) I was also told to eat everything I wanted and as much as I wanted as it would be the last time I could taste anything or eat solid foods.

Since this was all during coved, I had pastor Lewis and pastor Ashley come out to give me communion before surgery. It was after that when it finally it hit me, this could be my last time taking part in this simple but very important tradition.

The surgery was 14 hours long. I was in intensive care 3 days, and in the hospital 17 days total. I had a tracheotomy and my right arm was immobilized. (John is going to explain my surgery)

You are in your own body, but you can’t communicate with anyone else. First few days, pen and paper. When I was put in a room John brought my phone with the voice recorder. I still had all kinds of things hooked up to me so it was hard to type or write. I was told to go to the bathroom. I needed a nurse, and when I push the call button they asked, “How can I help you?” I couldn’t answer them. I learned to unplug myself and get to where I needed to go. If there was a problem I guess they would come in.

The liquids they fed me through the feeding tube gave me diarrhea. We knew their brand did that because I had used it before surgery. John got them to agree to let him go to Costco and get what I could eat and I could feed myself the rest of my stay.

A week after surgery. They took my immobilizer off my arm, I asked if I could use it. Well. Yes, a little bit. If it hurts you need to stop. I text John to bring my bag of hand embroidery. I started working on it first 10 minutes at a time and then longer and longer. The doctor would ask to see it each day and was amazed at the progress. I’m not a TV watcher so sewing and reading is my way of passing the time away.

I couldn’t make a phone call. When John would come in, we would go for walks. Several in a day before he would have to leave. After a couple of weeks, my intern doctor came in and said I don’t get it. You have had the biggest surgery on the floor, and are technically in the worst shape but you get up on your own early, wash up, feed yourself, switch over to the chair make out your list of questions and are reading or sewing when we come in and have a smile on your face. Nurses generally don’t like to take care of a patient with a tracheotomy, but when the head nurse calls your name, they all want to be your nurse for the day. Why is it? I told him “No one wants a. Grumpy patient and I just want to go home”

Going home was scary, 2 hours away from everyone that has taken care of me. Several machines that I need to survive. Lots of medical care from John and this was winter in the country.

I had lots of healing to deal with, besides my throat and neck, my leg, arm, and I had a hole in my throat that leaked. If I could have had a drink of water, it would have come out of the hole. Very minimal talking. John and I did not play enough charades before this all happened.

By April they wanted me to start a clinical trial, every 3 weeks for one year and then follow up for 2 years. We would not know if I was getting the real drug or a placebo. A short time later I broke out with red spots. My Dr. seemed excited about this but I wasn’t. Then he told me I was probably getting the real drug. I got a blood test and CT scan with contrast every 3 weeks and eventually became allergic to the contrast. The tracheotomy was removed in June, I could try to talk more and start taking sips of water. That was easier said than done because I couldn’t move my tongue to stop anything from going down.

I knew I had to learn this next phase in my new life if I was ever to eat again, but this might kill me. While I am choking in the living room. John is at the computer trying to find out how others do it. He found a product simply thick that made water-like pancake syrup. This made it a little easier. Put water in my mouth and tip my head back slowly and it flows back.

Baby steps. Lots of practice. My next battle was talking. I could hear in my head what I was saying and it sounded fine to me, why couldn’t John understand? Many times I would try to tell him something funny, I would have to repeat it and then I would tell him it was a joke because by the third time, it wasn’t funny. I would repeat things three times and give up grab him and say listen to me. I would say the ABC’s so he could tell me what letter didn’t come out right and then work on it.

I soon wanted more than water, so I started nutrition drinks like Ensure, chicken broth with simply thick, I would try just about any clear liquid. My life was now based on calories, I had to count everything to get enough. I could still taste and I wanted flavor.

I have tested recipes for the magazine Cook’s Country for years and wanted to keep doing it. I had to invite friends over to taste and tell me what they thought of the food. John enjoyed having someone to eat with.

After the year of clinical trial, I went to Rush every 3 months for check-ups. Still begging for more things to try. Pudding, yogurt, ice cream, thick soup. I got to a point I stopped using my feeding tube and ate everything by mouth. I wanted my tube taken out. They never had a patient with this surgery remove the tube so they did not want to allow it. It took 4 months of only eating by mouth and maintaining my weight and begging and I got them to agree, and it was removed.

At my appointment 2 years after surgery and 1 year after the clinical trial, the doctor came in and was very happy. He shared that at this point the cancer not returning was huge. I went from an 80% chance of it returning to about 20% It was at this point my doctor told me they never expected me to be alive at this point. My surgeon that was reluctant to work with me from day one is now my biggest cheerleader. Early on, he gave me the impression he was wasting his time with me, now he makes appointments just to see me and to know what I’m doing. My speech and eating coach got to a point I didn’t need to come back to him unless I needed something as I was beyond any of his dreams.

In February I asked my surgeon if my throat was changed in size in any way that I wouldn’t be able to eat regular food. He said no but I don’t want you to choke. I told him I won’t know if I don’t try. He then explained, but your tongue doesn’t move and tried to tell me about it. That was like an eye doctor telling a blind man what it was like to be blind. I cannot lick an envelope. I cannot lick my food off my lips. I can’t move my food around my mouth with my tongue. He finally told me to stay away from hot dogs and grapes. That was all I needed.

I started trying to eat almost anything, mostly softer foods. My finger became my tongue. Eating with me is like eating with a 2-year-old, I have my finger in my mouth moving food around so I can chew it then move it back on my tongue so I can take a drink and wash it down. Slowly. I am doing better all the time. Yes, I have choked and have scared John. About a year ago I was able to get communion juice down but in Last month and I was able to get my first bread. It was like taking my first communion. I was over the moon, Excited.

I still have a great love of sewing and quilting. I want to continue learning all I can about this craft. I signed up for an online course about machine quilting. It was an interactive type of class. We texted the teacher to ask if I could type my comments and questions. She called right away and wanted to know why. John explained what the problem was and I tried to talk some with her. I could tell she was very concerned this was not a good thing for me to do but I wanted to be in the class, so she said I could give it a try. Each class she would check with me and explain to the others why I was not chatting all the time with them. She still was worried I was not getting what I needed to complete this class. After a couple of classes, she asked for pictures of our progress. I sent mine in and she commented she guessed she wouldn’t worry about me anymore. (Show Quilt)

This week I ordered a kid’s meal at Freddy’s, hamburger, fries, and Sprite. I could eat like other 2-year-olds. The only thing I can’t eat so far is fried chicken, steak, pork chops, and drinking with a straw. Don’t try to tell me I can’t, with God’s help and patience. I will master them.

My next follow-up appointment is in September. I will also be meeting with a team of doctors to see if I can be a candidate for a pallet prosthesis which will lower my pallet and maybe help with my speech and eating. Modern miracles in medicine and the faith that God is always with me, I believe God has a purpose for us and is using John and me in some way.

In closing, I want to thank those who have blessed me in this journey.

• First of all, God and all of his medical miracles and the feeling of never being alone.
• My husband John who has been my rock, I couldn’t have survived without all he has done for me. On the first trip to Chicago I told him God knew which one of us had to have cancer and which one was the driver, if the roles were reversed, we both would have been dead. I hate traffic.
• Our kids, their love and support were so wonderful.
• Our family, the church family, and the community. The prayers, cards & letters, visits, and phone calls. The continued kind words and little things like saying you are in my prayers mean the world to me.
• I think those of us that have been in a life-threatening event realize we are on earth for a short time and every day is precious. Praise God for every day we have together.

Thank’s for listening

You can see for yourselves, and so can my brother Benjamin, that it is really I who am speaking to you.

Genesis 45:12

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