I Have Cancer: Now What?
Fighting through the first days!
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Introduction
The day of being given a diagnosis of cancer can be devastating. I don’t care how tough you are, how together you are, or even if you were prepared for something being wrong, you mind takes flight. It can be a traumatic experience.
I know from personal experience, I have been diagnosed three times. I was diagnosed with testicular cancer in 1990, colon cancer in 2002, and metastatic colon cancer in my lungs in 2004. My last diagnosis was extremely harsh, because my prognosis is not very good, and I am basically considered terminal (that is a word for doctors and medical charts, not for me!).
This phamplet is not backed by any science foundation, hospital or cancer center. It is just a collection of quick facts that hospitals and doctors sometimes miss, that I wish I would have had in those early days.
First Emotions
Sitting in a doctor’s office being told you have cancer can be a surreal experience. You panic; anxiety and fear rise, and a host of other emotions. You have cancer; you think the worst - what could be worse.
The first thing to realize if you have "cancer: it is a disease. It is not a death sentence. Millions of people have it. No matter how serious of a diagnosis and how poor the prognosis your cancer may have – people survive it, everyday. Surviving may be eradicated the cancer all together, or controlling the cancer and continuing on with your life.
Once you are diagnosed with cancer, for the rest of your life you are known as a "cancer survivor". Being a survivor means living with, and fighting against cancer. As you move into the cancer community, many of us prefer the term "cancer warrior" – for it is a war, one you can win!
Today there are over 10 million survivors in the United States alone. Survival rates are on the rise, new treatments develop daily. It was two years between my adjuvant therapy (chemotherapy to kill any tumor cells that might have been missed by surgery) to my reoccurrence. In that time three new drugs have been approved, several more are in trial stages and several more are ready to go to trial. New protocol’s (your treatment regime) are developed all the time. There is always hope, no matter how serious your diagnosis is. You have to believe!
It is natural to experience a lot of anxiety, negative thoughts, fear, depression, and confusion. Some people can handle it and work their way through it, others cannot. Do not be afraid to ask your doctor for something to take the edge off your emotion upheaval even as a temporary help. If you injure your knee, you have rehabilitation therapy. Cancer has a huge impact on your mental state, so why would you not do what was needed to help yourself recover. I needed help. I know people who did not. Remember, we may all have cancer, but we are all different individuals.
First Steps
After your doctor explains your diagnosis, discussion will turn to treatment options. Take baby steps.
First, try to have someone with you. You are in shock, and things are said that you will not completely remember. You receive a huge amount of information in those early days and it takes time to process. Having a spouse or friend for emotional support and to help process all the information that is coming at you is a great help. Usually the doctor loads you up with information and schedules a return visit to further discuss your options. Have someone with you!
Write things down. Borrow pen and paper from the doctor if you have to, or use the back of any materials he may have given you. As you listen and discuss, you can write down the doctor’s thoughts and plans, and you can make a list of questions as they arise.
Basically there are three options: surgery, radiation, and chemotherapy. Sometimes one option will be used, or maybe all three in combination. In 1990 I had surgery and radiation. In 2002 I had surgery and chemotherapy. In 2004, I began having chemotherapy. A lot of determining your course of action depends on your cancer.
Don’t feel the need to rush. Rarely is there a case where three of four days is going to make a difference. You need time to think, process everything that has happened and do some research on your own.
You may want a second opinion if something does not feel right, or just to be sure. If you have a good doctor, he or she should have no problem with your choice to do so. You can always return to your original doctor. I sought a second opinion, and my doctor was all for it. Once I compared notes, I returned to my doctor and we began making plans.
You also want time to explore your options, especially with protocols and clinical trials (trials will be discussed in a moment).
Research
You have been told you have cancer. Believe it or not, now it is time for you to go to work. Ask your doctor for an and all information he has on your cancer. Knowledge is power. Sometimes you can read too much, and things you do not want to hear – but for me, knowing is better than not knowing. Take a break now and then. Have your spouse or cancer buddy do some of the research for you as well.
Once you have made your initial plans for treatment with your doctor you can take a break from research, but now and then you should always check on what new things are developed. As treatment continues you may also have more questions, so look for and ask for the answers.
Next stop; your local book store and the internet. When I was diagnosed with colon cancer I found an easy to read book specifically on colon cancer at a national bookstore chain in town. It gave me a lot of great information, and questions to ask my doctor. I also went to the internet and searched for more information, which is often more up to date on protocol’s and treatment options as these change so rapidly.
I have created a links page to a variety of cancer sites, such as the American Cancer Society, and other organizations. You can find this site at the RiCaL Cancer Links page. It will save you some time in the initial stages of gathering information. You can also use a search engine and input your specific cancer to find more websites to view.
As you gather information, write things down, especially questions for your doctor. Go by the old adage "there is no such thing as a dumb question". I am paying a lot of money to see my doctor, I want to make sure he earns it.
Remember to consider, a lot of information on the internet is confusing, and not always in your best interest. There are alternative theories and practices that are not mainstream and may not present your best options. At least in the early stages, stay with the well known and respected websites like the American Cancer Society, Cancer Care, and the National Cancer Institute.
Your Doctor
The doctor you choose is very important. You have to trust they are doing the best they can for you, not just medically, but as a whole person.
When I had treatment in 1990 and 2002, no one spoke to me of nutrition, or support therapy, or mental health. It was pure science. I came in, got my treatment and left. Today it is much different.
Today’s doctors should approach cancer from a more holistic viewpoint. They treat the disease, but also your mental health, nutrition, and spirituality. They should care about the "whole" you. I see my medical doctor, the surgeon, the integrated medicine doctor, and a nutritionist. I tried acupuncture. I have massage therapy. Once in awhile I visit with a counselor at The Wellness Center. It is a package deal and all of these doctors will help get you through this time.
Mental Preparation
Once a course of action is determined, the focus of your mind and body become very important.
As a whole, you have to decide that you are going to fight, and you are going to win! You are a cancer warrior! I don’t care what the prognosis is, or the numbers, I am an individual and individuals survive cancer every day. I plan to be one of them. If it doesn’t turn out that way, so be it, but I am not go to accept it without a fight!
Sometimes, like my current case with a poor prognosis, I hold out help that I will be one of those rare people who go into remission (when a reoccurrence is eradicated). If not, I plan to try every protocol there is, keep going, and hope in time a new treatment will come along and that one will work. Cancer research and new drugs are constantly changing and there is always hope.
There is also the power of the mind. Your mental focus and body can do amazing things, you just have to unlock the key. There are times when cancer goes into remission against all odds – you never know until you try.
I also prepared myself mentally for surgery. The days leading up to, and especially the day before, I spent a lot of time in mediation and prayer. I went over in my mind what would happen, and how each cell would work to repair the body. Step by step I reviewed the healing process. I knew there would be pain, and I would focus that pain into healing. One thing to know in regards to surgery and pain management – the techniques have greatly improved to control pain. I was pleasantly surprised that I actually experienced a lot less pain than I was prepared for. The other thing to remember is pain quickly becomes a memory. It will pass, you will heal. Within a three days I went from pain medication and a tube inserted in my chest pumping pain medication to walking the hallways of the hospital, stiff and sore, but with very manageable pain.
My surgeon told me it would be about ten days after colon surgery before I could get out of the hospital. I told him I would be out in six. I prepared myself that I was going to heal quickly, and nothing would stop me. I won the bet. I do this same type of thing before and during infusion (when I am receiving my chemotherapy).
I believe "visual imagery" is very important as well. You can aid your body by imagining the medicines and treatments taking away your cancer. There is scientific research to verify the effectiveness of visual imagery.
There are a number of visual imagery experts out there. I really like Bernie Siegel and Belleruth Naparstek. Sometimes they call it "guided imagery". The talk you through scenarios where you can imagine your body healing itself and destroying the cancer. They also provide affirmations (positive statements that you listen to and come to incorporate and believe).
There are also cd’s and cassettes for relation therapy. Simply learning to relax, calm your fears and anxiety can be very important to your health.
I am also a firm believer in prayer. It is a personal thing, and each person has their own belief systems. For me, I find comfort in believe that God and Jesus will have an impact on my recovery. Each person must decide for themselves.
As you go through cancer you need to make time for YOU. Do not feel guilty about needing alone time, or needing a nap, or not being able to do everything you have normally been doing. You will have to make adjustments to your lifestyle.
I miss days at work, but still work fulltime. Not everyone can do that during treatment. If I need a day off, I take it. My health comes first.
I cannot do all the things I used to do. I am a very active person. I used to bike and lift weights, play sports and coach. I have had to make adjustments and accept that I cannot do everything I used to do at this time.
I have four children. Sometimes I feel guilty that I cannot do everything I use to with them, and at times they do not receive the attention I would like to give them. Remember, it is in their best interest that you get through this. They understand. Kids are smart, and pick up a lot just by observation. Discuss your cancer with them. You don’t have to give them grisly details, but they know you are sick. Explain fatigue, hair loss, and how much you love them.
Clinical Trials
A Clinical Trial is a study set up to study whether a specific drug is effective. Usually one group of test subjects receives the current standard protocol, and the other group (sometimes called a branch) receives the standard protocol and the new drug. In some trials you know whether or not you get the new drug, in some trials you get the drug or a placebo (water or fluid that could or could not be the drug), and you never know. I some trials you know which branch or group you are in.
Clinical trials can be good things. You may be able to get a new drug that you cannot get under ordinary circumstances, and it could make a difference. There are usually risk involved, that is why it is a clinical trial, to find out. Discuss details about the trial with your doctor.
When I was diagnosed with colon cancer in 2002 I participated in a clinical trial. I signed up and was randomized (my name put in the hat and drawn to see which branch of the trial I would be on). Unfortunately for me, I received the standard protocol. The other branch received oxiliplatin with the standard treatment. They are finding patients who received the new drug are having about a 50% less chance of a reoccurrence. That’s the way trials go. Sometimes you get the good stuff and sometimes you do not. Today that drug is approved for use in all patients, and while I did not receive it, I did help make it happen.
Clinical trials can be tricky sometimes. When I was re-diagnosed in 2004, my first doctor wanted to put me in a clinical trial for Avastin, a new drug. When I did my research and talked to two other doctors, I found the drug was already approved for use. I opted not to participate in the trial. I wanted the Avastin, for sure, right now. My new doctor went with my decision.
Clinical trials can be great things depending on your circumstances. Make sure to have all the details explained to you, and take some time to think about it. You can almost always find more information about your clinical trial on the Internet as well, and each drug company has details about their products, and where they stand as far ad FDA approval.
Side Effects
Sometimes with surgery, and almost always with radiation and chemotherapy there are side effects (effects caused by the drugs you receive). Discuss this with your doctor so you know what to expect.
When I went into surgery there was a possibility I would need a colostomy ( sometimes the bowel cannot be resectioned to the rectum and a bag is placed in the abdomen). Fortunately in my surgery they were able to resect the bowel after removing ten inches of colon.
Naturally after my colon surgery I had bowel problems. My surgeon took the time to explain all of the problems I might encounter, and how to take care of the issues. While I did not experience all of the problems, I was prepared.
The same holds true for radiation and chemotherapy. There are usually more side effects for chemotherapy. Some of these can include hair loss, insomnia, numbness in legs and feed, nausea and diarrhea, constipation, and a host of other symptoms.
When I was on the protocol of oxiliplatin, I developed a severe cold sensitivity and had to drink warm liquids and wear glover when touching cold things, had a lot of neural toxicity in my legs, which became very numb at times, and had some shortness of breath.
With my new protocol most of those have disappeared, to be replaced with some hair loss and bowel irritation. Each drug does different things, and not all patients experience the same side effects, or at the same level. It is a wait and see what happens, but again, knowing ahead of time allows you to prepare.
Doctors also have a lot of new medicines to help control many of the side effects, especially nausea, diarrhea, constipation and fatigue. My doctor works with a pharmacist to get me through my post treatment days and allow me to sustain a good quality of life. The doctor’s belief is while I am going through chemotherapy, it does not mean I have to be on my back resting all the time. Just the opposite, I should be able to carry on, and even exercise to some degree.
Remember that there are good days and bad. It is a roller coaster. I have heavy fatigue days when I have to rest all day, and I have days where I feel good and function normally. Almost every day I need a short nap somewhere. Survive the bad days and live for the good days.
Nutrition
What you eat and when can make a difference in how you react to treatment, and how you fight your cancer.
Fact number one; cancer feeds on sugar! Make adjustments to your diet to counter this.
Fact number two; Ginger tea is a great thing for chemotherapy patients. It help relieve nausea and allows you to intake fluids. You should monitor fluid intake. Once of the biggest dangers of chemotherapy is dehydration. Twice I have ended up in the emergency room for dehydration, the first time it was very severe.
I use a product called chai tea. I mix four bags of it, two bags of regular tea and two bags of green tea in my ice tea maker. It makes a huge difference for me. When I had cancer in 1990 and 2002, no one told me about ginger tea. WOW – it would have really been nice to know about it.
I also have good luck with yogurt, steamed rice and vegetables, and clear broth soups.
The integrated medicine doctor also started me on a variety of vitamins to help counteract the effects of my treatment. This varies from patient to patient and to different treatments. Make sure to discuss anything you may be taking with your doctor. Your own research is good, and there are many books out there on how to eat to defeat cancer, but make sure to discuss these ideas with your doctor. Some vitamins and foods can actually inhibit the ability of your treatment from working.
A nutritionist is also a great help. Eating a proper diet and getting the right nutrients is very important. I drink a power-shake every day with protein and a variety of other items set up by my nutritionist to help prevent muscle loss and provide things my body needs.
All of your doctors need to be on the same page and work together, and sometimes you have to be the mediator. Let each doctor now the full picture and what you are doing to improve your health. Your medical doctor should have the final say in what takes place.
Support Therapy
When I had cancer the first two times, I did the macho thing and did not seek any support therapy. I had my lovely spouse and family, and it was my problem. For me, there were repercussions later. Anxiety, depression, some post traumatic stress syndrome caused me problems.
While family support is so important, the support of others who understand what you are feeling and what you are going through is what is needed. Many cancer centers have their own support groups right there. There are also support groups on the internet. I live in a rural setting, and have an internet support group through "The Wellness Center". I have a group of five to ten cancer warriors who meet online once a week for an hour and a half. We also have a discussion board where we can post messages and stay in contact. It has become a very important part of my overall therapy.
Live Your Life
You have cancer. It creates anxiety and worry, changes I lifestyle and the possibility of death. Even when eradicated, there is the worry of reoccurrence. It is always there, in the back of your mind.
Your diagnosis can also have positive effects. Hard to believe sometimes. You can always find positive points to anything you face in life. My relationships with my family have moved to a higher level, bonded closer than every before.
I have a new perspective on life. We are all terminal, whether we have cancer or not. None of us will live forever. That is a fact. The key is to live your life, moment by moment and day by day. Enjoy the little things, the little memories and enjoy each minute. Save to good times to get through the bad ones.
I have developed a new inner self as well. Through meditation, relaxation and imagery I have gained more control over my life. I take time for me, and my health. I have grown spiritually and feel I have become a more Christian person, and closer to God in my religious beliefs.
I am at peace with death, though it still scares me, I know it is inevitable, and I am determined to "live" my life to its fullest, no matter how much time I have. We never know when God will call us, so enjoy the blessing you have and live your life.
God would not give me more than I can handle. I just wish he didn’t trust
me so much. ~ Mother Teresa
Contact Information
You can see my full website for cancer warriors at http://cancerawareness.rical2.net .
@RiCaL Enterprises 2005