In Everything Give Thanks
In everything give thanks; for this is the will of God in Christ Jesus. 1 Thessalonians 5:18 (KJV)
(Please note that this post is now available in PDF format: https://carlseay.com/static/everything.pdf)
Introduction
I have felt for quite a while now that I should write about my experiences from when I had cancer in 2015. It is at times an uncomfortable story so I kept wondering if anyone would be interested in reading it at all. The story is full of pain, discomfort, and uncomfortable tests and treatments. because of this, I kept putting off writing about it. The feeling that I should write about this experience never went away. This experience was extremely difficult and painful and it is not easy to put into words how this experience affected me physically, spiritually, and emotionally. As can be expected, cancer changed my life in so many ways – for both good and bad. When someone has cancer, their life is permanently changed and they will never return to be the same as they were before. This change is usually a negative one but may bring about some positive changes as well.
To be honest, this makes this a difficult (and painful) subject to write about. I hope that what I write will encourage some and be a blessing to others. Besides the pain and difficulty that cancer itself brings, cancer treatments are often so uncomfortable and drastic that they bring high levels of pain and suffering. This battle was not an easy one. There were many times that I did know how I could survive. I am still not sure how I survived the treatments other than through God’s grace. At the same time, I knew that God was in control and I believed that He would get me through it. I also recognized that this might be my time to leave this life so I had to accept that possibility and be prepared for it. I have never told anyone this whole story or written it down before. Of course, Yvonne traveled this path with me and suffered much through this journey. For so long, I was so thankful that God got me through this and I was still alive that I didn’t want to be seen as complaining by fully explaining just how horrible this event was to Yvonne and me.
My point in this story is to encourage people going through this and to inform them what cancer treatment can look like. My story may be different than yours. Different cancers call for different treatments. There is a wide variety of chemotherapy available and they have different side effects. People also tend to react to chemotherapy differently. And many cancers call for different types of surgery depending on location and type of cancer. So, please do not let my story scare you or keep you from getting treatment. It is here to inform you of what to expect. And remember; God is in control whatever happens. I wish I could say everyone will survive cancer but that does not happen. But as my friend Debbie told her doctor when he told her that she only had months to live from cancer, "You don't get to tell me when I die. Only my God can do that!" Several years later she is still alive even though she has battled multiple cancers.
Recognition
There are several people that I must recognize because of their roles in this story. I truly believe with all of my heart that it is only by the grace of God that I am still alive today. I cannot explain why God allowed me to live when so many others do not.
First of all, I have to recognize my wife Yvonne. She became my caretaker at home. I cannot give her enough credit for helping me survive this ordeal. She was the one who literally had to pick me up off the floor numerous many times when I collapsed. Sometimes I was able to get up on my own while other times I could not get up without help. During this time, she was working part-time while trying to take care of me. Twice she had to rush me to the Emergency Room. It is just as hard on the caretaker as it is on the patient. It is so hard to see the one you love going through this and not know if they will survive this ordeal or not.
There were so many friends and family who kept me in their prayers and offered constant encouragement. Although I was not up to having company, their encouragement and prayers were an unbelievable encouragement to us. My old friends Randall and Cheryl Crain sent me an amazing care package in the middle of my treatment. More important than the actual items in the package was the thought behind it. This care package meant so much to Yvonne and me. My children – Rhonda, Kimberly, and Carl encouraged me from a distance. My step-sons Daevid and Tim encouraged me. Many churches, especially The Grove in Maysville, Georgia, and Sonlight Baptist Church in Colbert, Georgia were amazing in their support and prayers. Also, many other churches that friends and family members attend also had me on their prayer lists. So many family and friends contacted us to tell us that their churches were praying for us. Other friends and family also sent cards or called to check on us often. So many friends and relatives all over the country were in constant prayer for us. There is so much encouragement and comfort in knowing that people all around the country are praying for you.
Brenda Mealer is a special friend of ours who attends church at The Grove. Brenda and her husband Henry were a special encouragement to us. She sent several cards to us. Those times that we were not able to attend church, she would call Yvonne to check on us and to remind us that she was praying for us. Those times when I was able to attend church, Brenda and her husband Henry were among the first to run up to hug our necks. I cannot emphasize enough how much of an encouragement Brenda was to Yvonne and me during this time. Brenda spent much time in prayer for us.
I have to state with no doubts in my mind at all that it is only by the grace of God that I am still alive today. I cannot emphasize this enough. I thank God daily for allowing me to see another day. I have no idea why God allowed me to live through cancer while others do not.
I have chosen a title for this story that has nothing to do with cancer directly, but there is a reason for this title though. This reason will become clear in the section below entitled Giving Thanks. Please note that I am a Christian – a believer and follower in Jesus Christ. Because of this, everything that takes place in my life is looked at through the lens of the Bible and my relationship with God. I am unable to separate things that take place in my life from my relationship with our Creator. I understand that this offends some people. My intention is not to offend anyone but at the same time, I am unable to separate incidents like my cancer from my relationship with Christ.
December 2014
Although my cancer was not found and diagnosed until March 2015, this story actually began in December of 2014. That month was a miserable time for me physically. I was still working full-time at the University of Georgia and was working full time on my Master's degree from the seminary at Liberty University. I was battling major sinus problems. At the same time, I began having trouble swallowing. I was also battling what was later was diagnosed as pneumonia. It took several doctor visits before they were able to diagnose and correctly treat that. Along with these problems, I had a chronic earache in my left ear that refused to go away. The doctor could not see anything very wrong with the ear and thought it was probably fluid buildup. After a chest x-ray, the doctor prescribed some antibiotics for pneumonia. I started feeling better but still had chronic earache and difficulty swallowing. Earaches are not supposed to last for several months at a time.
March 2015
One Thursday early in March 2015, I had another follow-up visit with my primary care doctor, Mary Bond. She thanked me for being patient with them as it took a while to track down pneumonia. As part of my examination, she felt my lymph nodes in my neck as doctors always do. She immediately gave me a funny look and asked me how long the lymph nodes in the left side of my neck had been swollen. I replied that I had noticed them a few days before but that I thought the swelling had gone down so I hadn’t worried about it too much.
I could tell that Dr. Bond was very concerned. She had Ruby, her nurse, make me an appointment for a CAT scan of my head and neck area for the next morning (Friday). I was not overly concerned about it but was a little concerned because Dr. Bond was not the type to overreact.
On Friday, I went to work as normal. I left work long enough to go get the CAT scan and then returned to work. I was not too worried about it as I worked. I figured that Dr. Bond would let me know what was going on. That evening, as I drove home from work, Dr. Bond called me on my cell phone. I was surprised as I knew that she normally didn't work on Fridays. She told me that she had already gotten the results of the CAT scan back. It showed a lump in my throat and several lumps on the left side of my neck. She had already talked to my ENT Dr. Mixson before calling me. She explained that Dr. Mixson thought there was a fifty percent chance that the lumps were something serious. She told me to be at Dr. Mixson's office on Monday morning at 11:00 and they would fit me into the schedule. I knew then that there was a chance that we were looking at cancer even though Dr. Bond did not use the word cancer during this conversation. I could tell that she was very worried.
Yvonne and I were concerned that weekend while we waited for my appointment with Dr. Mixson on Monday morning. However, we did not let it upset or worry us too much. We felt like God was in control no matter what was going on. That weekend we did not tell anyone what was going on because we did not want to worry anyone before we knew for sure what the problem was. At the same time, we had the weekend to pray about the situation and to prepare for the possibility of cancer.
The following Monday, Yvonne and I went to Dr. Mixson's office. They were able to squeeze me into the schedule. Dr. Mixson looked concerned but not overly so. He explained that he was going to scope me to see what he could see in my throat. He had previously scoped my sinuses so I was familiar with the procedure. To explain: When the doctor has you open your mouth and sticks in the used popsicle stick in your mouth to look at your throat, he or she can still only see a portion of your throat. To see the entire throat area better, the doctor must scope you. This involves running a scope with a tiny camera and light at the end of it through your nose. The doctor curves it down into your throat area. The camera displays the picture back to a monitor and also records it to a flash drive. This is not a painful procedure but it is an uncomfortable one. I became extremely acquainted with this procedure as I had to endure it numerous times over the next five and a half years.
As soon as the camera reached my throat area and the picture appeared on the monitor, Dr. Mixson grimaced. I knew then the diagnosis was cancer. He pulled the scope out and told us that he was sorry but that I had throat cancer. He was able to see cancer on the base of my tongue. Of course, Yvonne and I immediately had many questions about what we needed to do. At this point, if I had cancer I was ready to start treatment as soon as possible. Little did I know that the start of treatment would take two or three weeks to begin.
Since the CAT scan that Dr. Bond had ordered for me also showed several lumps in the lymph nodes in the left side of my neck, Dr. Mixson wanted to do a needle biopsy on my neck. At that point, I agreed to it as I was ready to do anything needed to get started on treating the cancer and getting better. He tried to warn me how uncomfortable this procedure was. It was still a surprise. He numbed the skin area of my neck with Novocain. The Novocain did numb the skin area but not inside my neck. The long needle went into my neck three times to obtain the biopsy samples. I won't lie - it hurt! The biopsy was then sent to the lab to be tested for cancer. Dr. Mixson called me a couple of days later and confirmed that the biopsy did test positive for cancer in my lymph nodes. Because cancer had spread to my neck lymph nodes, it was considered Stage IV.
My biggest surprise came next. I had been diagnosed with Stage IV throat cancer – squamous cell carcinoma. I was ready to get started on treatment. Let’s get started on taking care of this problem now before it grows worse and spreads further throughout the body. It had already spread to the lymph nodes of my neck. I do not want to go through this, but if I have to go through this, let’s get started on treatment today. To my surprise, the doctors were not ready to begin treatment yet. One problem was that they wanted to make sure everything was set to go because once treatment begins, they do not want to stop it to take care of other issues. The start of treatment can wait a week or two, but once it begins, they do not want to pause treatment for anything unless it is an absolute emergency.
Because radiation and chemotherapy are extremely hard on the mouth area, I had to go see my dentist to make sure everything was in good shape before treatment began. Under the circumstances, my dentist got me in quickly and fixed a couple of small cavities so that treatment could begin. Dr. Mixson stated that he did not want to initially do surgery to remove the cancer from my tongue because that would cause me to have to need a temporary tracheotomy. I agreed with his decision as no one wants a tracheotomy – even if it is temporary.
For the next step, I had to select which radiation oncologist and which medical (chemo) oncologist I was going to use. I had several friends that had battled cancer and they highly recommended Dr. Richard Loyd at Cancer Specialists of Georgia (Northside Cancer Institute) for the chemotherapy. Dr. Loyd was a great choice and a very special doctor. He made me feel like he was a friend as well as my oncologist. Although I was not always happy with a few of his staff, I never regretted selecting Dr. Loyd.
I had no idea who to choose for the radiation oncologist so I asked Dr. Mixson who he would recommend. He recommended Dr. Gordon Schoenfeld at University Blood and Cancer Center. I said okay and asked why he recommended Dr. Schoenfeld. He related that when his father needed radiation treatment he researched all of the radiation oncologists in the Athens area and Dr. Schoenfeld was the one who had the most up-to-date and advanced training and equipment. That sounded good to me so I agreed with his recommendation. I was happy with this choice and grew to appreciate Dr. Schoenfeld and his great staff.
Special note: When you are battling cancer for your life, the doctors and their medical staffs become an important part of your life. Instead of seeing your doctor once or twice a year, you are seeing these doctors weekly or even several times a week. You soon learn to depend on them for your life. They are making decisions every time you see them that will help determine if you live or not. It is much more than a normal doctor and patient relationship.
Five-year survival rate
When someone is diagnosed with cancer, they immediately relate cancer to a death sentence because many times it is. Fortunately, medicine has come a long way over the years and they are making great advances in cancer treatment and survivor rates. So, one of the first questions a newly diagnosed cancer patient has for the doctor is what the five-year survivor rate is. As I quickly learned, this number is not set in stone and it depends on who you ask as to what answer you will receive. Fortunately, throat cancer (even Stage IV cancer) is treatable and most people survive this treatment. The answers I was given for the survivor rate for Stage IV throat cancer were somewhere between 65% - 70%. Of course, the survival rate for throat cancer that has spread to other parts of the body is much lower than this. Because the throat area is difficult to see without a special scope, throat cancer is rarely discovered before it has spread and become Stage III or Stage IV. Mine was Stage IV because it had spread to the lymph nodes in my neck. Of course, a PET-CT scan was necessary to determine if the cancer had spread to other parts of the body before treatment was started.
First PET-CT Scan
Before starting treatment, a PET-CT Scan was necessary to make sure that cancer had not spread further through the body. If it had spread, treatment would change to fight those cancers at the same time. Fortunately, the PET scan showed that the cancer had not spread beyond the lymph nodes in my neck. I quickly learned that I hate PET-CT scans and hope that I never have to have another one. I knew that I hated MRIs and hoped this would not be as bad. Well, it is just as bad but it is thankfully much quieter than an MRI.
Start of Treatment
After two or three weeks of preparation and testing, treatment finally started. I had my first PET-CT scan, I had been to the dentist and gotten their okay to start treatment. Even then, the process took time. Dr, Schoenfeld decided on 35 radiation treatments. This consisted of treatment every day, Monday through Friday, for seven weeks. The radiation treatment would be the primary treatment to shrink and kill the cancer. To supplement the radiation treatment, once a week I would also go to Dr. Loyd's for a chemo treatment. This would entail seven chemo treatments. The chemo's purpose was to assist the radiation in melting the cancer. Dr. Schoenfeld warned me that treatment would not be easy at all. He said that most patients started feeling rough about the fourth week of treatment. From that point onward, I was to expect things to be very uncomfortable for a while.
Radiation Therapy
Radiation treatment is a complex treatment. Modern radiation machinery requires careful calculations to treat as much of the cancer as possible while minimizing damage to the noncancerous tissue. The first step is to have another CAT scan of the areas where the cancer is. The information from this CAT scan is then sent to a department in the doctor's office that calculates the necessary programming for the radiation machine to focus, as much as possible, on the cancer itself. This department employs very intelligent people with master's degrees in physics. Their job is to program the positions and angles for the radiation treatment. This is to aim the radiation toward the cancer itself and to try to minimize damage to noncancerous tissue.
The second step in the radiation treatment involves making a mask that snaps to the table to hold you still during the radiation treatment. This was another step that I did not expect. Because the calculation for the radiation treatment is so exact, you must be snapped down to the table to make sure that the radiation reaches the cancerous areas while minimizing damage to other areas. To make the mask, you lie still on the table. They place an extremely warm flat mask over your head and then stretch it down over your head and shoulders and form fit it to you. The mask has snaps that snap onto the table. You lie still there for about 10 minutes while the mask cools and hardens.
They let the mask cure for a couple of days before treatment starts. Radiation treatment is a strange procedure. I first went into a small changing room. There I took off my shirt and my glasses and put on a hospital-type gown. I would then sit down and wait until they called my name. This usually took five to ten minutes. Then they would take me across the hallway to the radiation treatment room. This few minutes of waiting did allow me to meet others who also were waiting. I would talk to them and to try to be an encouragement to those I met. Often these patients had horrible burns from the radiation treatments and were quite miserable. I actually met two patients that had throat cancer. Both of these patients were on their second bouts with throat cancer and they had to have a portion of the tongue surgically removed. The doctors had rebuilt their tongues using muscle from the chest and skin graft from their leg. It made me so thankful that I did not have to have part of my tongue removed by surgery.
The preparation for the radiation procedure involves sitting on the table and then lying down. The technicians would line me up correctly and then snap the mask over my head and shoulders so that I could not move an inch. You can see and breathe through the mask somewhat. The scary part is that it is holding you so that you cannot move. Fortunately, the whole procedure rarely lasted more than 10 – 15 minutes. This procedure does not hurt, but it is very uncomfortable and scary lying there and not able to move while the radiation is beaming at you.
The technician leaves the room and shuts the door. It takes a few minutes for the technician to load the programming for your session. Once the programming is loaded into the machine, the technician tells you through the PA system that the session is beginning. The machine has heads on an arm. This arm then slowly scans over your head and neck area using imaging to make sure everything is lined up exactly right. Usually, the table needed adjusting a little bit and the technician would push a button and you would feel the table move one way or another. Once everything is lined up and ready, the radiation machine changes from imaging mode to radiation mode. You can hear the heads on the arms of the machine turn over. Then the arms pass over you again shooting the radiation beam into you. I admit that when it changes into this mode, you tense up knowing that it is shooting dangerous radiation rays into your body.
Dr. Schoenfeld's staff – both technicians and nurses were great. I rarely had any trouble or concerns with any of them. They were always professional but friendly and caring. The only trouble I had with the staff occurred before treatment began. Their insurance lady told us that I had a $50.00 copay for each treatment. The number of treatments was 35 so this came to $1750.00 total. They preferred to get this copay before treatment began. If I paid for it all then, they would give me a discount. I explained that my insurance plan did have a copay for seeing the specialist doctor but no copay at all for treatment. We went back and forth discussing this for about 15 – 20 minutes, She kept threatening to call my insurance company to verify. I kept asking her to please call them because I knew what they would say since I had already checked into this previously. Because I refused to pay what she wanted, she finally followed through with her threat and called the insurance company. She finally followed through with her threat to call Anthem-Blue Cross/Blue Shield. Of course, they confirmed what I was telling her was true. She was amazed and told me how lucky I was to have this insurance plan. I still had to pay the copay each time I saw the doctor, but this benefit saved me $1750 on my treatment. I later accidently found out that each individual treatment cost about $1250. Once a week, after my treatment, I had to stay after treatment and follow up with Dr. Schoenfeld.
Weight Loss
Weight loss is quite common with cancer as well with cancer treatment. There are several reasons for this. One thing your doctor normally watches is for unexplained weight loss. Cancer thrives on sugar. As cancer grows, it starts using more of the sugar in your body. This can cause weight loss even though you are not trying to lose weight. Therefore, unexplained weight loss can be a sign of cancer in the body. Since my cancer was on the back of my tongue, I had begun having trouble swallowing. This had started in December of 2014. I had no idea what was going on but I knew something was not right. Because of this trouble, I had trouble eating as much as I usually normally did.
Starting about the fifth week of treatment, I had another problem. My throat was now so raw and burnt from the radiation that I could barely swallow anything, including water. Because of the trouble I had with swallowing I had completely quit eating food and was living on Boost Extra Protein shakes and some water. That was all I could stand to swallow. Added to this now was the burnt throat area. I could barely force myself to drink a little water and Boost every day.
It is probably a good thing that I was very overweight when I started treatment. For three and a half months, I could not eat any real food. Over three months time, I lost 55 pounds. I went from 218 pounds to about 163 pounds. I was not in good shape at all and I do not know how I managed to stay alive during this time. Before I started treatment, the doctors had recommended that I have a feeding tube placed in my stomach. Because I did not fully understand just how bad things would get, I turned them down on this. Later I wished that I had allowed them to put the feeding tube in.
This weight loss also had a couple of unintended and unexpected consequences. The first was that I lost so much weight during treatments that my radiation mask became loose on me. It no longer held me tight on the table during treatment. Because of this, they had to make a new mask for me. I still have the second mask they made for me. They did not give me the first one but did give me the second one after treatment was completed. The second consequence was that it caused a change in my chemotherapy. I did not realize it at first, but the chemotherapy dosage is partially dependent on your weight. There came a point in treatment that they had to recalculate my dosage and give me less chemo for the rest of my treatment because of my weight loss.
Chemotherapy
Chemotherapy works together with the radiation. The oncologists coordinate treatment so that you start both treatments the same week. They kept in touch with each other during treatment. At the same time, chemotherapy was completely different from radiation. I was getting radiation five times a week for seven weeks. Chemotherapy took place once a week for those same seven weeks. My chemotherapy day was on Thursday. I would schedule my radiation treatment on Thursdays to be an hour or so before chemo. That way I could get both appointments done while I was still in Athens.
Every treatment day in chemotherapy starts with you being called into the lab. This holds true even after treatment for every follow-up visit for five years after being declared in remission. In the lab, they weigh you, take your temperature, and check your blood pressure. Every visit then involves blood being drawn. Chemotherapy is so damaging to your white and red blood cells and other blood chemistry that this must be monitored closely. All blood counts and vitamins and minerals are checked to ensure that do not get too far out of range. Then the lab technician would start an IV if you did not have a port. I had chosen not to get a port put in. This proved to be another mistake on my part. My arms, wrists, and hands became almost solid black and blue during this time. All of this took place before going in to get your chemo infusion or to see the doctor. To complicate things, once a vein had been used for chemo it could not be reused because of the damage the chemo caused. So it was a battle each week to find a good vein that had not been used before and that would hopefully not collapse. Several times the vein would collapse and a new vein would have to be selected.
As mentioned above, Dr. Richard Loyd was my medical (chemotherapy) oncologist. He came highly recommended by several friends and I quickly grew to appreciate him. He was an extremely caring doctor. He was soft-spoken and he made the patient feel like he was your friend. Usually, Yvonne was able to go with me to my treatments and Dr. Loyd was careful to answer any of her questions or concerns. He also was quick to check with her to verify my answers to his questions. A couple of times I saw him when one of his patients had passed away from cancer. Those times upset him greatly. He hated to lose patients to cancer. It made him feel like he had failed the patient.
After seeing the doctor, the next step was to go into the infusion room. This room had a TV (sometimes on and sometimes not), filtered water to drink, healthy snacks, and recliner chairs. These chairs were old when I first started, but the last two or three weeks of treatment they had purchased new electric-powered chairs with remote controls. The remote would allow you to recline your chair automatically. These new ones were much nicer than the old ones.
Once I was in the infusion room, I had to try to make myself as comfortable as possible. My time in there usually was about four to five hours (occasionally longer). The process could not be hurried. The blood tests that I had at the first part of the visit determined what they gave me in the IV before the chemotherapy. They usually gave me an anti-nausea drug even though cisplatin does not usually cause nausea. They often had to give me iron or magnesium because cisplatin causes a loss of these. I was usually getting several things in the IV for two or three hours before they hooked up the cisplatin.
My chemotherapy was cisplatin. This is very strong chemotherapy is based on platinum. Yes, it is based on a metal. I was fortunate that my insurance policy had no copay on treatments so I never learned just how expensive this treatment was. I am sure it was very expensive.
There was never any doubt about when they started pushing the chemo. The fluids and other items they gave you went just like getting an IV in the hospital or the doctor’s office. Then when they brought out the chemo, things were a little different. Now the technician had on a face shield and gown as well as the gloves that were always worn. You immediately knew that they had the dangerous chemo and hooked it up to your IV. I always felt like they were giving me poison at this point. It was a little scary.
Surgery
Finally, after seven long weeks, my treatments were done. I was in very bad shape health-wise but I was still alive. That was the most important thing. Next on the agenda was to have another PET-CT Scan to make sure all of the cancer was gone. To my surprise, Dr. Mixson made me wait two months to have my scan. He explained that the radiation continues cooking cancer for a while. This was disappointing, to say the least. I had just been through the worst seven weeks of my life. I was extremely weak and still was not able to eat. I wanted to hear those magic words that I was free of cancer. One of the main lessons I learned from cancer was that you must be patient. You want treatment to start immediately. When treatment is over, you want to be cancer-free and go on with your life. However, you have to be patient and let the medical world do things according to their protocol.
Finally, two months after my last treatment, Dr. Mixson sent me for a PET-CT Scan. When the results came back, we were disappointed. The results showed some small lumps and activity still in the lymph nodes on the left side of my neck. Thankfully, my throat and tongue areas were completely clear of any cancer or lumps. The radiation and chemo had done it's job on the tongue. At first, it was not clear whether the lumps in the lymph nodes were cancer or damage from the radiation treatment. There were two choices: wait and see if the lumps grew or to have surgery to remove those lymph nodes. Of course, Dr. Mixson advised to have the surgery as in his experience, there was a good chance that it indicated some small cancers. At that point, Dr. Mixson had overseen me through the cancer treatment – coordinating with my oncologists. I looked at him and told him I trusted him with my life so I would have the surgery as he suggested.
Dr. Mixson does not do this surgery. Dr. Norris and Dr. Katz in his office do this surgery often so they were the ones who would operate. I had a brief meeting to meet them and talk about the surgery. Once again, it was time to wait. They wanted to make sure I was healthy enough to survive the surgery. I needed a note from my cardiologist. Fortunately, I had seen him about three weeks earlier so he authorized me to have the surgery. About four weeks after my PET-CT Scan, I finally was scheduled for surgery. I had been able to start eating a little bit by this time but still was not able to eat much. A couple of days before surgery I had the pre-op for surgery and met the anesthesiologist. The anesthesiologist threatened to cancel the surgery because my blood sodium level (salt) was too low. Yvonne and I discussed the matter and went out and ate Chinese food because they tend to use a lot of salt in their food. It must have worked because they checked my sodium level the next morning at the hospital and never mentioned the sodium level. As usual in the hospital, the surgery was delayed until later in the afternoon.
The operation was expected to be about two and a half to three hours long. The first step was that they biopsied the back of my tongue to make doubly sure there was no more cancer. The biopsy was rushed to the lab. If the biopsy had shown cancer, they would not have removed my lymph nodes. They would have just stopped surgery until all of the options for throat cancer were dealt with. Fortunately, no cancer was found in my throat or on my tongue. Because of all of the radiation damage, the surgery took about six hours, much longer than predicted.
After the biopsy, they then proceeded to dissect my neck on the left side. They later explained what they did in there. There was massive tissue damage from the radiation therapy. They had to scrape the damage from the major nerves in my neck and my left carotid artery. After that, they were able to remove my lymph nodes on that side of the neck. They also removed my juggler vein on that side. They explained that you need both of your carotid arteries to survive but only one of your juggler's veins. They were able to remove all of the lymph nodes on the left side thereby removing all of the cancer. Three of the lymph nodes still had minute amounts of cancer present in them.
Unfortunately, scraping the three major nerves on the left side of my neck caused further damage. Most of this damage healed itself over the next year or so. One damaged nerve went to the left ear. So for about six months or so, my left ear area of my head was very numb. This was a minor inconvenience. Another one of the nerves controlled the left shoulder. For the next year or so I dealt with constant pain in that shoulder. The third nerve was the one that controlled my tongue. My tongue just would not work right. It felt very weak. I slurred all of my words and I was difficult to understand when I talked. This finally got better after a year or so. Although this got much better, I often still deal with trouble talking – especially when I get tired. I start slurring my words and have to slow down and concentrate on what I am saying. Sometimes I do not realize it until someone asks me to repeat myself several times because they have trouble understanding what I am saying.
Finally, after my surgery on September 16, 2015, I was free of cancer and in remission. Of course, the doctors will never say cancer-free. You are considered to be in remission until your fifth anniversary of being free of cancer. During that five years, the doctors will keep a close watch on you to make sure cancer does not return. Only after that five years are up with no sign of the cancer returning do they really consider you cancer free.
The Side Effects of Cancer Treatment
I have mentioned some of the side effects and problems that pop up during treatment. However, there are many more than I have mentioned. Some of these are temporary and some of them are permanent. Every chemo treatment will have different side effects and problems. And what may be temporary in one patient may be permanent in another one. These are listed to help others understand what cancer patients can go through. I mentioned above some of the problems caused by my surgery (neck dissection).
Chemotherapy tends to attack fast reproducing cells like cancer. This is not limited to the cancer cells only though. White and red blood cells, taste buds, and saliva glands are other cells it attacks. The damage to the saliva glands causes dry mouth. This is a major problem. It makes it difficult to swallow anything. It also does much damage to your teeth and gums. A healthy mouth requires moisture. Although the saliva glands eventually did start producing again, much of the damage to my teeth and gums is permanent. I will battle dental problems all of my life.
By killing the white blood cells, chemotherapy pretty well destroys your immune system temporarily. The oncologist warned me repeatedly that any fever was to be considered an immediate emergency and this was the reason for an immediate call to the doctor’s office. Even after treatment was complete it was a long time before my white and red blood cells returned to normal. Even six years later my immune system seems to be weaker than normal.
My taste buds were one of the first things damaged. As mentioned above, during treatment, I could not eat food. Even after I started being able to eat, it was difficult to eat due to being unable to taste anything. My taste did eventually return but it is not quite the same as it was before my cancer treatment.
Chemotherapy kills off the saliva glands in the mouth. I then developed a very dry mouth. Good dental health requires a moist mouth. A dry mouth causes damage to the gums and teeth that continues even after the saliva glands start producing saliva again. Because of this, I continue to battle dental problems and damage caused by the radiation and chemotherapy.
As mentioned, different chemotherapies have different side effects. Cisplatin is known for damaging hearing. I already had some hearing loss but not bad enough for hearing aids. After my treatment, it became obvious that it had damaged my hearing enough that hearing aids were necessary now.
Cisplatin is also well known for damaging the kidneys. Fortunately, this is temporary most of the time. I was not one of the fortunate ones. The oncologist watches the kidney function levels closely during and after the treatment. The chemotherapy damaged my kidneys so that they only work fifty percent of what they should. This is called Kidney Failure Stage III. The good part is that this does not require dialysis and it is not expected to get any worse.
During treatment, between the weight loss and my dehydration, my blood pressure dropped a lot. I was able to completely come off of all of my blood pressure medicine. I also developed hypostatic hypotension blood pressure. This occurs when your blood pressure is at one level, and then when you sit up, it drops lower. Then, when you stand up, it drops dangerously low. Because of this, I had times when getting up in the middle of the night, I would find myself lying on the floor, wondering what happened. One night I went to the restroom and the next thing I knew, I was lying in the bathtub with a large knot on my head. Fortunately, Yvonne woke up when I fell and came and helped me back to bed.
Radiation and chemotherapy can cause another problem called fibrosis. I developed this problem in my jaws. Combined with the damage to my tongue nerve, it was very difficult for me to talk in a way that people could understand me. Thankfully, this has improved a lot. However, this fibrosis in my jaws still causes me much problem with eating. I can now eat, but anything that is the least bit chewy or tough will end up getting spit out. My jaws just cannot stand endless chewing. This greatly decreases my options for finding something to eat. There are many foods that I love but refuse to eat because my jaws complain about chewing them. Another problem that I still have from fibrosis is that when I cough or yawn, my jaws lock up for about 10 -15 seconds. I am unable to talk plainly at all until they unlock.
After my treatment, it was discovered that my thyroid had been damaged by the radiation. Through a couple of month's trial and testing, we were finally able to get the correct dosage of Synthroid to take care of this problem. I am thankful that this was a relatively minor issue although it means I will be on this medicine for the rest of my life.
Lack of energy is probably the worse effect of cancer and its treatment. Fatigue is a major problem during treatment. Fortunately, this problem usually resolves itself eventually after treatment. There is a certain percentage of cancer patients who never regain their energy levels. For some reason, I am one of those who did not regain much energy back. It is a constant battle for me battling fatigue and not having the energy to do what need to do or want to do.
The Emergency Room
After treatment was complete, I was constantly dehydrated and weak from not eating or drinking enough water. I still could not eat anything. The radiation keeps on working for a while shrinking the cancer. I was to do nothing except rest and get better. About two weeks after the completion of my treatment, I was so weak and dehydrated that I felt like I was going to die. I had Yvonne call the doctor and take me to the emergency room. It was Memorial Day so the doctor’s office was closed.
The emergency room started an IV. Well, the nurses tried about nine times and failed. Finally, they called the IV team who was able to start the IV. They gave me two bags of fluids to rehydrate me. The doctor ordered X-rays and a CAT scan of my throat because it was so raw I could not eat and barely could drink. The CAT scan showed that my epiglottis was severely inflamed from the radiation. After two bags of fluid, he sent me home with a prescription for steroids. Fortunately, the steroids began healing my epiglottis but I still could not eat and had trouble drinking. The steroids eventually healed the epiglottis and I was able to drink better and eventually start eating again.
A week later, I was once again so dehydrated that I felt like I was going to die. I had trouble walking from the bedroom to the living room to lie on the couch. Once again, I had Yvonne call the doctor and tell him that I was going to the emergency room. This time when I got to Athens Regional Medical Center, I was too weak to walk in. Yvonne got a wheelchair and took me in. We registered and then went into triage shortly after. The triage nurse took my information and then began taking my vital signs. She checked my blood pressure. She had a funny look on her face. She checked the blood pressure again. Without saying a word to me, she picked up her phone and dialed a number. I could hear the Emergency Room PA system as she spoke. She announced something like “Medical Code 2 in Triage 1." She continued getting my information. About that time, the back door into the emergency room burst open with two nurses with a wheelchair. Yvonne and I were not sure what was going on. They picked me up and put me in their wheelchair and took off. They got me to a treatment room and got me on the bed and immediately started undressing me as other nurses or technicians started coming in. I knew I was in pretty bad shape but it was amazing how quickly they took care of me.
I explained how many times they had tried to start an IV the previous week in my emergency room visit and I did not want to go through that this time. This time that did not attempt the IV themselves and called the IV team who came and started the IV. I ended up staying all night while they pumped me full of fluids and monitored me. After giving me three bags of fluids, I felt much better they finally sent me home.
Giving Thanks
In everything give thanks; for this is the will of God in Christ Jesus. (KJV) 1 Thessalonians 5:18
On the day that Dr. Mixson gave me the diagnosis of cancer, as Yvonne and I drove home, a strange thought came to me. It was the above verse. Immediately I realized that somehow I was to give God thanks even in this situation. I silently prayed and told God that I did not know how to give thanks for cancer. I told God that if I needed to give thanks to Him for cancer then He would need to show me how. I realize that to many people this will sound very strange. I had just been given a diagnosis of cancer that had a very real possibility of killing me. At the least, I was facing months of horrible treatments.
God did show me how to be thankful for cancer in some ways. As I went through treatment, I realized that the other patients I was meeting were hurting and scared. I was able to talk with these other patients and offer encouragement. Many were in pain and miserable. Somehow, I was able to meet some of these and offer them a smile and an encouraging word. At the same time, Yvonne was able to do the same thing with the patient's family members in the waiting rooms. I admit that this was not an easy task for us as Yvonne and I are quiet introverts. Meeting strangers and sharing encouragement with them are not easy tasks for us.
This encouragement to others continued even after treatment was done. I had found a t-shirt on http://amazon.com that says, "My God is Bigger than my Cancer." I started wearing it where ever went. So many people stopped to tell me how much they liked my shirt. Numerous times this allowed me to tell people what God had done for me in getting me through the cancer treatments. I do not know how many people I have had the chance to talk to abut my experience. Once, in Walmart, a gentleman stopped me and asked if he could pray for me. I explained that I no longer had cancer but that I could always use prayer. In the middle of Walmart super-center he reached out and took my hand and prayed for me. People were all around us and probably thought we were strange or crazy but that was fine. When he was finished, I thanked him and we went our separate ways.
This is the story behind the reason for the name of this article. I had realized that God desires us to give thanks to Him for whatever situation we find ourselves in. We have to understand that God is in control of our lives. Even in stressful, painful, and difficult times, we are to give thanks to God. These times may be difficult. God can use them to teach us to depend on Him. He may use these times to teach us lessons and grow in Him. He may use these times to share what God does for us with others. He uses these times for His glory. There are often difficult and painful times that we may never see positives come out of, but we are to still give Him thanks for them. We may never know what good God is using these situations to accomplish.
Change in Priorities and Perspectives
When someone has a life-threatening disease such as cancer, it tends to change your whole outlook on life. At least, this was true for me. This caused many changes in several areas of my life.
One temporary change was in some ways I had to become temporarily more selfish. What does this mean? All of my energy and strength changed from trying to be helpful to others and do things for others to concentrating on me. This was very difficult for me. All of my energy and strength had to concentrate on just getting through this and getting better. All of my energy went into getting through my treatments and somehow staying alive at the same time.
As a Christian, I had always depended on God to take care of me. This became truer after having cancer. When you are battling a potentially deadly disease, you learn quickly to depend on The One in control. He holds your life in His hands. You have to do your part and take care of yourself but ultimately He is in control and decides if your time is up or not.
Many things that were once important to me, suddenly did not seem as important. Somehow life becomes more precious than it previously did. When friends or relatives pass away now it seems to upset me more than it used to. After being so close to death, life is more precious than it once was. Don’t get me wrong, I know that we all face death at some point. We all have lost loved ones and friends. I really can’t explain the change in me other than to say that life is a precious gift from God. At some point, He calls us home and we must be ready for that. The death of family or friends seems to hit me harder than it used to. Possibly this is because I came so close to death myself.
Things that used to bother me no longer seem as important. Does the yard need cutting? We will get to it when we can. There are more important things in life. Does my hair need cutting? We will get to it eventually. Maybe these things are important to others more than to me but life is more important. Spiritual life is more important also. Making sure that we carve out time for the Bible and prayer is vital.
Ring the Bell
There is a tradition in cancer treatment that when you complete your last treatment, you ring the bell at the front of the doctor’s office. For some reason, my chemotherapy doctor did not seem to have a bell to ring. However, Dr. Schoenfeld’s office did have a bell. I still remember the great feeling after my last treatment as the front office staff reminded me to ring the bell, Even though I was so weak and could barely drag myself back and forth to my treatment, it felt so good to ring that bell! It was so nice to know that my last treatments were over. The hope was that between the radiation and chemotherapy that the cancer was completely gone. That story is covered in the Surgery section above.
Pain
When I originally wrote this, I left an important aspect out of my story. That subject is about pain. Unfortunately, pain is often a major problem in cancer and its treatment. The type of cancer and its location can dictate how much pain is involved. Sometimes the pain is moderate and sometimes it is intolerable. I did not start out with a lot of pain other than a chronic earache. Oncologists are very aware of the reality of pain and are ready to prescribe pain medicine as needed. The also have a pain clinic available if it is needed.
My real battle with pain really began during treatment. When radiation therapy is used, a bad burn is very common. I was fortunate in one way as Dr. Schoenfeld had recommended several lotions for the skin to help minimize burns from the radiation. One of the recommended lotions was Andree’s Organic Botanical Moisturizing Gel. It is made and sold by a lady named Andree in Athens, Georgia. We went and talked to her. Years ago she had cancer and gone through radiation treatment. After being burned so badly by the radiation, she developed her own lotion. I bought the gel from her and used it faithfully during treatment. I never once received a burn on my skin from the radiation. I have recommended this gel to others undergoing radiation and they all have loved it. I cannot promise that you won’t burn if you use this gel but most people never burn from radiation while using it. During treatment I met many others who had not used this gel and many of them had horrible burns on their body.
Unfortunately, there is no gel or ointment to protect the inside of the body from burning. As mentioned above, the radiation badly burned my throat (epiglottis) area. I could barely stand to sip a little water and Boost. I could hardly talk. I could just croak out a few words. It is extremely frustrating when you cannot communicate with others. The doctor put me on a pain patch (I do not recall the name of it) that had to be changed every three days. He prescribed hydrocodone liquid along with the patch. What he did not tell me was that the hydrocodone contained 6.2% alcohol. If you have a sunburn, you would never pour alcohol on it. Well, when you have a throat badly burned by radiation, you should not drink anything with alcohol in it. Trust me, it is just not a good idea! So I suffered a lot with the pain in my throat.
Eventually, we were able to work out a way to temporarily ease the pain enough to drink the medicine a little bit and be able to take my necessary medicines. The doctor prescribed lidocaine liquid. I had to take some, swish it around my mouth to coat everything and then swallow it. Of course, the label on the bottle said not to swallow it, my the doctor told me to swallow it anyway. After that, I was to wait a few minutes and then my throat would be numb enough to take the hydrocodone. Then I was able to drink some and take any needed medicines. I was still afraid to eat at that point, but this allowed me to drink more water and Boost. The pain eventually got better after the emergency room doctor prescribed a round of steroids.
Conclusion
I know that this story has been long and I apologize for that. There were so many things I wanted to share. At the same time, this story does not fully communicate the depth of the pain and the difficulty that cancer and its treatment cause. So many of the treatment side effects continue today. I did learn how to thank God for everything including cancer. I learned so much from this situation and I changed through it. At the same time, I have to confess that I never want to go through this again!
Updated October 26, 2022