Surviving Head and Neck Cancer 2X Over 32 Years

by GregP_WN

Our blog post today is from our WhatNexter of the Week, "LCompston". She is a two-time head and neck cancer survivor and was kind enough to share all of the details of her 32-year journey, the good, bad and ugly.

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I believe my journey started in the 7th and 8th grade of school. It was the start of me surviving head and neck cancer 2X over 32 years. I always had Mono and was in and out of the doctor and on antibiotics all the time. In 8th grade, I had a major math test. Right before the test, I started getting a headache. My head started hurting so bad I couldn’t see straight. After the test, I noticed my face started to tingle and feel funny.  

In April of 1985, I went to the doctor for a swollen lymph node. Plus, I had all the signs that I may have Mono again. He took blood work and started treating me for mono again. I took the antibiotics for a month and the limp node had just gotten larger. The doctor then decided to do a biopsy and remove the lymph node. While in recovery from the surgery, I overheard the nurses talking – Cancer they said. My doctor immediately called MD Anderson and got an appointment made with the Head and Neck department.

My official journey starts the summer before my senior year. I go to MD Anderson and get diagnosed with Stage III Nasopharyngeal Carcinoma. This type of cancer is strongly linked to the Epstein Bar Virus which causes Mono. In 1985, Nasopharyngeal Carcinoma Cancer was rare in the US and most patients were male and over the age of 55. 

About a week after I arrived at MD Anderson, a gentleman named Tommy arrived with the same condition. Tommy was 5 years older than me (22). Tommy and I were told we were the youngest patients that had come to MD Anderson with this type of Cancer. We were told they were going to experiment with us to see if they could find out what it would take to cure the Cancer. We were told that most of the patients could not handle the strong Chemo and Radiation that was necessary to kill the Cancer.

Treatment 

Surgery was not an option. Tommy and I started out with Chemotherapy - Cisplatin and 5 FU. We would check into the hospital for 8 days and take both of these two Chemo drugs alternating them for 7 days. We would go home for 21 days and come back for more. We did the Chemo treatments 3 times. During the treatment, I would lose 25 plus pounds. I will say for 7 days, I usually did not make it to the bathroom. I was throwing up and also had diarrhea, at its worse. I would not let them bring food in the room. I could tell you as soon as the elevator doors opened with food. 

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After Chemo, we started Radiation. We took Radiation twice a day for 8 weeks. Yes, we both lost weight but I fought not to have that feeding tube. My unhealthy died consisted of bacon fried super crispy so it fell apart in my mouth.

During my radiation treatment, I went to school at MD Anderson every day. They had a teacher I would work with and she would report my grades back to my High School. My schools would send in my assignments and every day, I had to work to get them done. This was a huge challenge because I was so tired and felt so drained. 

Fatigue is one of many side effects of Chemo and radiation. My throat was raw and I didn’t even want to talk. This was my senior year of High School and in order to graduate, I knew I had to go to school and do the work every day. When I went home for a visit, I would go to the school to see my teachers and friends. This was hard because kids can be so cruel and make fun of people when they don’t know their story and battles. I had radiation markings on my face and was teased I was still in my Halloween costume. After radiation, I had to start going back to High School every day. I was not allowed to participate in any sports. I had played basketball for years and was on a starter on the team. I could no longer play basketball and this was so hard to understand as a teenager.

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The good news from all of this is I have since found out that they still use this treatment today. Probably not both Chemo’s at the same time and I am not sure if the radiation is still twice a day or not. If by going through all of this we helped changed other lives, it was worth it all.

My doctors told me I probably would never have any children. In 1990, I got pregnant and had a miscarriage. This was a very difficult time for me but I know this happens to many people in life. In 1992, I got pregnant again and my son, Layne, was born in October. Layne came out not breathing and was in NICU for a week. He came home with a heart monitor for 3 months but he continued to improve and was a healthy baby boy. 

In 1995, Tommy got a 2nd cancer in his tongue and lived about a year. When I would go to MD Anderson for a checkup, we would go to see him. This was extremely hard on both of us. Here I am healthy and he is again battling for his life.

Side Effects from the first battle with Cancer:

I started out with all the basic side effects: dry mouth & throat, Sinus issues, Allergy Issues, Hypothyroidism (Hair loss and all the side effects that come with Thyroid issues), fatigue 

Related Article: The Hidden Side Effects of Radiation

Later down the road, I had Cellulitis twice from root canals at the dentist. One of those times, we had driven down to the C Bar Ranch to go camping and horseback riding. This all started on a Friday afternoon. I started having a very bad sore throat and couldn’t eat dinner because it hurt so much. By midnight, I was running a high temperature but did not want to wake my husband. I could barely swallow and did not sleep at all. I finally woke him up at daybreak and told him we had to leave. He felt me and realized how high my fever was and loaded the horses and our supplies up and we left to take me to the emergency room in Dallas. 

The Cellulitis infection had spread from my upper cheek down past my belly button. The pain was horrible. I didn’t even want clothes or blankets touching me. I started out a Baylor in Dallas and after two weeks, the doctor felt I was better and he sent me home on Amoxicillin. I told him that was not strong enough antibiotic and my fever would be back. Two days later I am at my primary care doctor and he is calling MD Anderson to get me admitted. The doctor wanted me to take care flight to MD Anderson but I insisted my doctor give me something to sleep and my husband drove my mom and me to Houston. I was still in a lot of pain and the swelling and redness were coming back in full force. 

The doctor at MD Anderson was also worried about blood clots from the radiation too. I was at MD Anderson for two weeks and finally convinced the doctor to send me home with strong antibiotics. I was on antibiotics for the following year before I finally beat the infection. The main problem was that the medication could not get to the infected area due to the radiation and scar tissue.

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When I went home from MD Anderson, the company I worked for called me as I was driving home and wanted me to come to the office immediately. The next day, my husband took off work at noon and took my son out of daycare so he could drive me to Irving. We drove all the way to Irving for my boss to tell me I was being let go. This was devastating news for both of us. 

When MD Anderson sent me home, they also recommended I do Hyperbaric Oxygen Chamber treatments. This helps oxygen flow and helps medication get to areas better. I had to drive to North Dallas every day and make sure I stayed on schedule to take my antibiotics every day.
I also did the Hyperbaric Oxygen Chamber a second time to get 12 teeth pulled. The dental surgeon would not pull any teeth until I did some treatment before and after he pulled my teeth.

Related Article: Preventing the Dental Side Effects of Head and Neck Cancer Treatment


I would schedule appointments with MD Anderson every two years as follow up appointments to run a routine CT Scan and do blood work. I asked my doctor if I was the oldest surviving patient that he knew of who beat their battle with Stage III Nasopharyngeal Carcinoma. His answered yes but your life is about Survivorship. You will always be surviving your treatment from cancer.

The major issues started about 15 years after treatment. I started having issues eating and swallowing food. Choking on food and making all those great sounds as you try to get the food down. I even remember figuring out ways to cough up pills and food back out that would get stuck. My eating became an issue because the back of my tongue quit working due to radiation from 32 years ago. I have had many swallow studies over the years. Eating out was difficult. Often I would choke on food and have to go to the bathroom to cough the food up or make myself throw up to get it out. This can be embarrassing and if you don’t breathe, you can cause yourself to pass out. I actually did that at work one day. I was eating a chicken nugget during an office meeting. I started choking and got up to leave the meeting. I made it to the bathroom and passed out on the floor.

I decided to get a feeding tube February 2016. I kept losing weight. I was not ready to use the tube (pride that it would make me a lesser person, less attractive and a whole new change in my lifestyle) but I knew eventually I would have to. At this point, all my meals were being pureed in a blender and I was drinking all of them. In April 2016, I started aspirating and getting pneumonia. From April until August, I fought with this pneumonia battle until my Primary Care Physician says to me - go to MD Anderson for a checkup. She knew I had to use my feeding tube or I was going to die from aspirating.

September 19, 2016, I went in for my yearly CT Scan and bloodwork. The next morning we got up and got dressed to go meet with my doctor. I checked my schedule and noticed I had a new appointment on the schedule, a biopsy. We go to my appointment to see my doctor and learn that he believes I have Saliva Gland Cancer. I went to have the needle biopsy done, and he wanted to schedule a surgery to remove the submandibular gland. This all happened on my 49th birthday – September 20th. I also immediately started using my feeding tube 100%. No liquid at all is to be swallowed.

It took me four months to find a food my body would tolerate. Finally, in January, I started using Real Food Blends and my body tolerated it up until recently and my body started rejecting the food and sending me to the bathroom after every meal. This can become an issue when you eat seven times a day. Now we are going to try a new formula, Liquid Hope. I will also add that it is not always easy to get the food delivered. I can order the food and there have been some months where I have ran out of food before the next shipment is delivered. When you rely solely on a company to deliver your food each month, this can be a big challenge. Maintaining my weight is a key role in surviving. Without food, this can be a huge challenge.

Treatment:

Surgery – First surgery was to remove the saliva gland and to test it. After the biopsy and results come back, I learn I have Adenocarcinoma Stage II –Submandibular Gland Cancer. This is my 2nd Rare Cancer. The second surgery, which ended up being a 10-hour radical neck dissection; where they removed my right thigh muscle and two arteries from my left hand/wrist to try to repair my neck.

Radiation – 35 treatments – Chemotherapy is not an option for this type of cancer.

Current Side effects – 

100% feeding tube – no liquids in my throat at all. NO exceptions. I use a small spray bottle to wet my mouth. 

Maintaining my weight – Nutritionist diagnosed me with Cancer Cachexia – the first 4 months of food did not agree with my stomach and I immediately went to the bathroom as soon as I ate. The nutritionist tried to blame me that I was not doing it right. So I let them try many ways and still had the same results. Plus I kept losing weight. Finally, I got a new nutritionist and she set me up with Real Food Blends. I kept trying to tell them I was mainly a vegetarian before I was diagnosed with the 2nd cancer. Recently, I have tried some Salmons and Chicken meals through real Food Blends but they are not agreeing with my stomach. I am hoping to try a new meal plan called Liquid Hope which is very full of nutrition and vitamins and made of a lot of different organic vegetables. At least now, I am somewhat maintaining my weight. I have not gained any weight but I am holding steady.

Dry mouth, Crusting from sinus, allergies, etc. Crusting in nose, mouth, throat, Only way to get the crust out is with dental tip or fingernail. Very Bad Breath too. A sore throat and raw throat from all crusting. This also causes bleeding.

There is a hole in the back of my throat in front of the carotid artery. This has been in my throat for past 3 years so they figure it is from my first round of radiation in 1985. I often get ulcers in it from drainage.

Speech – I have been very nasally for years and with my tongue having issues not working properly and after my last surgery, my tongue on right back side doesn’t move. Speech without proper tongue movement is almost impossible. I have been told by MD Anderson that this will only get worse. My speech has been my biggest struggle in all of this. I have been to speech therapy and that doesn’t help when your tongue doesn’t work. I have adjusted to all the side effects and even the feeding tube. Yes, I have my struggles but I can push through them. I told a friend of mine, I can handle cancer any day of my life but you take away my speech and I feel worthless. I have lost my communication and my voice. Sometimes a friend or even my husband will make a joke about my speech, not even realizing what they have done. I walk away and just cry. I talk about it to my husband and my son. I have no control of losing my speech. This is one area I have really struggled with and the reality of one day not speaking at all. 

I haven’t been able to work for two years now. I was let go from my job the day after I came home from the hospital from getting my feeding tube. I had been with the company 13 years.

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My jaw often freezes in place and can be painful to touch. Sometimes feels like needles poking in the bone. It almost feels like nerve pain to touch at times. 

MD Anderson is worried about bone deterioration of the left jaw. This can cause infection and once the bone dies, you usually have to have major surgery to replace the bone. Usually they take a bone fom your leg and put it in your jaw.

After surgery left side of my mouth is drawn down when I smile or talk. For the past 3 years, there are times when I feel the left side tingling and really drawing down even more. 

Depression – yes I believe I have had some with my eating issues, not being able to work and feeling like I am not in control of my life. My speech issues also get me down. I often find myself crying when someone cannot understand what I am saying to them.

I just needed a purpose. So I started a Cancer Support Group in Ellis County where I live to encourage others as they battle cancer.
I am scheduled to go back for a checkup at MD Anderson on April 9th. They will do a CT Scan of head, neck, and chest. I also have a follow up with Dr. Weber the Chief of Head and Neck. 

I have always stayed positive throughout my journey with Cancer. I know I have helped many other people over the years with their battles with Cancer. Giving advice on food and just helping them push through the pain and fear of fighting the battle. I always let them know they are not alone.

I have a wonderful son, Layne, who is 25. I was always told I would not have children because of the Chemo I took. Layne has also blessed me with two wonderful grandsons, Gavin – 4 and Gaige who is 2. I have been married to my husband Donnie for 29 years. Donnie has been with me every step of the way through many of my battles and journeys. I am blessed with a great mom, Josie who also has never left my side for my entire journey.

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I was the Survivor Chairperson at Relay for Life in Ellis County for about 10 years.
In 2011, I walked the Komen 3 Day Walk for my friend Christine Shanto who was battling breast cancer. She was not able to do the walk but she was able to stand with me at the end as a Survivor. In 2013, I rode my horse Doc in the Ride for a Cure, Honoring Christine.

What have I learned most on these journeys in my life? My Sister n Law Janet says to my husband, “How is it that she never complains?” I can only look at it this way: I am alive. I am better off than a lot of people in life. I have a fabulous family and good friends. I am truly blessed. My Faith has also kept me strong because I know I am not done with my journey in life. I am not sure what my current purpose in life is at the moment. But I do know that I will find my way and find my purpose. 

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Beliefs, Family, and Faith have kept me pushing through each of my journeys in life. -LCompston

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