TOM'S STORY:
My name is Tom. I am a stage 4 liver cancer survivor. Brad Bott, who has become a close ally in our fight with this disease, asked me to write our story so that we could share our “keys” to beating this thing. I have read some of the posts on the forum, and I feel very humbled to be writing this. I ask myself all the time why I made it and others don’t. I ask myself whether or not anyone wants to hear this. I ask myself how I can look someone in the eyes and tell them I beat cancer when maybe they can’t.
My name is Jennifer. I’m Tom’s wife. I was there to provide moral support, do the legwork, make sure the appointments were scheduled and keep everyone else on their toes. I was also there to encourage Thomas and keep him going when he really wanted to give up. I love Thomas more than anything and it was my job to do whatever it took to make it work. My southern roots gave me an overdeveloped sense of politeness which miraculously vanished whenever Thomas was in danger of getting lost “in the system”. My strength came from my faith in God.
The following is a bit about how our story unfolded while at the same time giving you our physical, mental and spiritual “keys” for survival. We hope that by sharing our experiences, you can use these “keys” to improve your odds. Brad likes to say we did everything right. We don’t know if that’s true, but we certainly learned a lot along the way, and both of us think we became better people in the process. Hopefully we can pass the knowledge we gained on to you to help you in your fight.
Key #1
God saved me.
We don’t know how or why, but that is what we believe. We are leaving many aspects of my recovery out of this writing, but my recovery started with a knock on the front door of our house in Virginia. A neighbor wanted to buy our house. There were other houses for sale in the neighborhood; ours was NOT one of them. A month later, we were on our way to Park City, 20 miles from Huntsman Cancer Institute, the only place in the country conducting the clinical trial that I was to become a part of, and where I would meet the lung cancer oncologist that would eventually bring my liver cancer into remission. Thomas likes to tell people that there is too much coincidence to be coincidence, and we truly believe that.
Key # 2
Trust, but verify.
Learn everything you can about your disease and do everything you can to fight your disease. Ask for and keep copies of your labs and find out what they mean. Find out what the normal ranges of your markers are. When things get out of that range, find out what you can do to help keep it under control. The internet will be an invaluable tool here. For instance, Thomas takes Milk Thistle which is supposed to help keep toxins out of the Liver.
In our many visits to Huntsman for chemo or clinical trial treatments, we had the opportunity to overhear conversations between other cancer patients and their doctors, family members and nurses. The infusion room is one large space and you try not to invade the privacy of others but you can’t help but take in what’s going on all around you. Both Jen and I were constantly amazed at how many patients didn’t know anything at all about their disease and were perfectly fine with not finding out. Ask lots of questions, even the really hard ones. This can be strangely empowering. Besides the grueling physical aspects of cancer there is a very dark emotional aspect. Knowing about your disease and using the information to fight for your life will help you regain some of the control that you feel you have lost. The hard part is reading about how slim your chances for survival are, especially if you have GI cancer, but don’t let that deter you. In order to learn about all the treatments available, you need to know as much as you can about your disease.
Key # 3
Find a physician that you can relate to and that you trust.
My cancer was in a very advanced stage when it was diagnosed. The tumor in my liver was enormous and the cancer had spread to my lungs and a lymph node. The first oncologist we saw at Huntsman was very frank about my condition. He said that basically all he could offer was palliative care and that any therapy was probably only going to give me a few additional months at best. In his mind, I was terminal and what he told me was that I might not want to spend the rest of my days on Earth sick from chemo. OK. Some people are fine with hearing the cold hard facts, but I had just watched my Dad die from cancer not two weeks earlier so dying from cancer wasn’t going to work for me. I’m analytical. I needed a physician that was able to provide the cold hard facts but had a little room for hope as well.
All the physicians at Huntsman are top notch or they wouldn’t be at Huntsman; all have different personalities and bedside manners. Our first oncologist wasn’t wrong, he was just wrong for us. It’s vital that you are paired with a doctor that meets your emotional needs as well as your physical needs. If you don’t jive with your oncologist, get a new one. It is as simple as that my friend. It’s your life and you call the shots.
Key #4
Explore the possibility of a clinical trial and if you find one you think might help you, don’t take “no” for an answer.
There are numerous clinical trials being conducted at Huntsman. Find out which ones you might be a candidate for and then do your own research on the Internet. Most drug manufacturers have their own website where you can review press releases and other news about the company, past clinical trials, their success rates, other institutions where they are conducting trials and so on.
Here is a great story about our experience with a clinical trial. The first physician we had, the one mentioned in Key #2, told us that a particular trial being conducted at Huntsman was my very best hope for prolonging my life. He told us what the trial drug was and how it worked. The theory of how the drug was supposed to work made perfect sense to us. We thought this was good. We had finally been given some optimistic news and we told him we would like to become part of the study. He checked with the doctor who was conducting the trial only to come back and tell us that the trail was full! We were devastated. We were beyond devastated. We had just been given a shred of hope only to have it snatched away in a matter of minutes. Words can’t describe the utter despair and panic we felt. It was one of the most incredibly desperate moments you could imagine. Well, Thomas has two basic rules in life. First, when someone tells you “no”, it means “I can’t have it, so why should I let you have it”, or, “I don’t want to deal with it”. Second, and Jenn’s personal favorite “The rules are made to weed out the weak”. We got home that afternoon and Jennifer turned into a woman on a mission. She hit the phones and then the Internet and then the phones. Jen first called every person at Huntsman trying to get us into the trial. She was told very kindly and very sympathetically “no” by every person she spoke with. Her next move was to use the Internet to look up the name of the drug company conducting the trial. She then called the drug manufacturer and explained the situation. Jennifer first needed to ascertain if a) there was drug available and b) if they had any issues with adding another person to their study. Timing is everything. Because most of the key employees of the drug company were attending a seminar, she was actually forwarded to one of the senior management staff members of the drug company. Her request eventually made it all the way to the drug company’s CEO. It didn’t look promising but we had done all we could do. We felt good about the effort we had made and now it was out of our hands. That night, our specific prayer was that if Thomas was meant to be in the trial, we would somehow get in. Two days later the phone rang, we were to be number 13 out of 12 in the trial.
Key #5
Give your body a fighting chance.
The human body is an amazing thing. It has such a capacity for self healing if you give it something to work with. There are multitudes of self-help books available about beating cancer, some of them with really bizarre themes. After wading through dozens of them, we settled on a book titled “Beating Cancer With Nutrition” written by Dr. Patrick Quillin. You can’t possibly do everything that every book recommends so you have to find the one or two sources of information that make the most sense to you. For us, the source that made the most sense to us was Dr. Quillin’s book. We didn’t follow the protocol exactly and the text was a bit scientific making it sometimes hard to follow, but the one thing we learned was to stay away from sugar. Tumors love sugar and need it to thrive so don’t give it what it needs. In fact, PET scans use radioactive glucose to identify where tumors are located. That sugar goes straight to the cancer cells where all the bad stuff lights up like a Christmas tree. When we were in the infusion room and they would give me the little candy bar, Jenn would take it from me.
The basics of the book tell you to eat a healthy diet and STAY AWAY FROM SUGAR! The next time you want a donut, think about this. The only thing you are feeding with that donut is your cancer. I ate a lot of stews and soups made with beef, chicken and vegetables. I actually gained weight while I was on chemo. The book has many good recipes in it that will help you keep your weight on and at the same time give you nourishment. I also gave up Diet Coke (caffeine and Aspartame) and many of the other “staples” I had become accustomed to. The beautiful thing is that after a few weeks, the foods that you used to think you’d never be able to give up, you no longer want.
Key #6
Let People Help You
Tell people what you need and let them help. They want to do something so let them. It’s sometimes hard, especially when you feel so physically an emotionally drained to let others do for you but this is critical. You have been hearing me use “us” and “we” a lot. I could not have done this without the help of my wife, Jennifer. Next to God, she is the reason I am still alive today. Jennifer worked tirelessly to help me. She was constantly on the internet looking for some sort of help. It was difficult for her to separate the wheat from the chaff, but somehow she was able to come up with recipes and other programs to help me. Jen couldn’t have helped me as much as she did if she hadn’t let others help her.
Key #7
Fight Your Disease By Taking an Active Roll in Your Care
One of the ways to keep your mind off of what you can’t do is to focus on what you can do. What you can do is take an active roll in your care. Make yourself visible. Whatever you do, don’t become a number. When you walk into Huntsman, your caregivers need to know and recognize you. The only way that’s going to happen is for you to really engage them. There is a white marker board in almost every hospital and treatment room at Huntsman and at the University Hospital. On it is a section for your doctor’s name, your nurse’s name, etc. Somewhere on that board is a space for “Our Goal Today Is To” and then someone usually fills in the blank. On the first day of my first treatment, Jennifer and I decided to name my tumor “Floyd”. On the marker board, we erased the goal of “provide you with really good care” and changed it to the sentence “Kill Floyd.” That turned lots of heads but “really good care” just didn’t seem to be adequate. We engaged the nurses and physicians who were responsible for my care. We let them know that we were informed and we wanted to stay informed.
Keep a diary of how you feel, what you are eating and how all of it ties in with your labs. You will soon be able to tell what your body is doing based on these factors. If you got sick from chemo, see what you ate before and after, then change it. Your diary will help you from making the same mistakes over again. Sometimes, my calcium levels would spike a bit. Over time, my oncologist was confident enough in my own diagnosis to let me steer the treatment and pass on drugs if I thought the spike was transient. Because of my diary, I always knew when it was.
Key #8
You Need A Lifestyle Change
I firmly believe that one of the things that has kept me alive is my lifestyle change. Being an international airline pilot, I was always trying to catch up on sleep. I was always eating junk food and the only vegetable I got was from ketchup. I didn’t exercise and I didn’t take any vitamins. That has all changed. You must keep the rest of your body as healthy as possible. Do what you can and then a little bit more.
The Bottom Line
Don’t give up. I went from a patient who wasn’t much more than a candidate for palliative care to someone who has been cancer free for almost nine months. My cancer CA spiked at 965. Yesterday, my CA was 23. That is the lowest it has been since my surgery which was on August 10th of last year. It has not been an easy road. I still have numbness in my feet on occasion and my ears ring constantly but I’m alive and my quality of life is excellent.
I’ve heard the phrase “you’ve got to fight your disease” so often but didn’t really know what it meant until I was diagnosed with cancer. If you think you have had a good life and there is nothing left for you to do, I honestly don’t see how you can survive cancer. You are going to feel like crap from the chemo. You will be scared beyond belief at every new pain you feel. You will be on a roller coaster ride that will lead you to the depths of despair. You must find the courage and will power from somewhere to keep on going.
See Key#1.
Disclaimer: Just as we did, please get your doctor’s advice and consent before taking any supplement or changing your diet. This is our story; it’s about how we made it through a really difficult time. Feel free to take whatever advice we can give but please, chose your own path and be convicted about your decisions. Most importantly…..lead, don’t follow.
Thomas and Jennifer. Last edited on 06-18-2007 03:49 pm by
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