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Sylvia C. on May 17, 2010
I was Diagnosed with:
Stage IV colon cancer
long term disability
Type and Description of Treatments:
After surgical removal of my left lung, two-thirds of my colon, 2 lymph nodes, appendix and gallbladder, I was treated for 8 months of 5FU and Avastin infusions. One month off, then went on a regimen of Avastin for 5 1/2 years. Intermittently over that time, small tumors appeared in the right lung. I had 2 radial frequency alblations and cyberknife treatment. Currently off all cancer medications. I go every 6 months for petscan. The last scan showed residual uptake in a tumor area but inconclusive as to whether the tumor is active. My blood work and cancer numbers continue to be normal.
How do you feel today?
Overall, I feel great. I have gained 10 lbs in the past 6 months and would like to get that off. I am happy that I don't have to go to the doctor's office so often. I had intermittent battles with chemo brain during the treatments and seem to have forgotten some things. But definitely have kept my sense of humor.
I also feel so thankful to be alive. I express that through my art and sharing with others. That is difficult sometimes because it reminds me of some of the pain that I felt when I was going through my treatments; but it also reminds me to continue to be strong and have courage...to see myself beyond this disease.
Since the diagnosis, what has changed in your life?
I think one of the biggest challenges has been the decision to go out on disability. I never saw myself not working. I miss the people that I used to work with. I miss the income and standard of living that I had. I've had to live with my daughter for the past 6 years, and though I'm extremely thankful, I miss my independence terribly.
The medical bills still weigh on me. Even though I am on Medicare and have a good insurance plan, the treatments are astronomically expensive. There is little form of help to deal with this.
There is also the fear of the unknown that creeps up sometimes. I think about going back to work. The company that I did work for is laying off everyone and moving the division offshore, so my job is not there. I continue to receive benefits until I am 62...7 years longer. I don't know if I am insurable, if I work for another company. It seems like a gamble and then what if the cancer returns? Will the new company have the great benefits that I am currently receiving?
Most of the time I am happy and try to be content with my life by surrounding myself with people who are good for me.
I research recipes and foods that will help me provide my body with the nutrients needed to keep cancer at bay. I add supplements to enhance my rebuilding of my immune systems. I also have changed the way I cook and set limitations on what I won't eat.
I read more. I share more. I love stronger.
What is going well for you right now?
Things that are going well...
My relationships with my family and friends. The confidence in my doctor and staff to give me the best care available. The extra time I have to give to my grand children...to see and contribute to their growth. This new creative discovery of art that has emerged. The time I have to get organized. I love the fact that I am still willing to try new things and grow. I have immersed myself in photography and developing that skill.
Emotionally and spiritually, I am together and connected.
What is not going well for you right now?
Financially, I am depressed. I have exhausted my resources to pay for the expense of this disease and the bills keep coming. I have sold my furniture, most of my household possessions, and my piano (which was such a joy in my life.) I have no home now. Anything I have left is in my 11x13 bedroom and a small storage unit. I couldn't even take care of my beloved dog, Jasper, because some of the treatments were making me so sick. I had to find him another home. This broke my heart.
I hate not having my own place to live...really hate it.
What has been the most challenging thing about having cancer?
While I've always been a giver and caregiver to others, it has turned me into a receiver and I am very unaccustomed and uncomfortable with that role. My security has been rocked. I feel very defenseless at times. I feel that I have been sucked into the world of medicine that has it's own incestuous existence. I have had very little control and so much of the expense, in order to save my life. It has robbed me so much of my dignity, quality of life, and resources.
There is a huge leap of faith needed to trust others with my life.
When difficulties overwhelm you, where do you go for support?
I first try to gain knowledge through research. Then turn to friends or family. Then, depending on the circumstance, I seek outside help whether it be a nutritionist, psychologist, doctors, massage therapy, etc.
I also do self help and expression through art, music and helping others through volunteering.
How have your long-term goals or life goals changed since diagnosis?
Most certainly. I wasn't sure what my prognosis would be when I found out that I had advanced stage colon cancer. The numbers were indicating that I had a less than 20% chance of surviving. But, I am here, 6 1/2 years later. So, it has definitely changed the way I viewed the longevity of my life. Life has become more simple, less stress, more focused on what is really important. (I don't sweat the small stuff.) I have seen a remarkable calmness come over me. I want to believe that I have come through this battle and want to put it in perspective, but I am not convinced that it is truly over.
What is your work arrangement right now? What are your hours?
I went out on long term disability 3 years ago from my job.
Since the diagnosis, what has changed in your work life?
I found it to be too stressful to work while I was going through treatment. My job was very demanding and I tried to continue to work for 3 years. I felt that the stress was contributing to my cancer.
What advice do you have for others trying to work through treatment?
Build a solid team of doctors, friends and specialists who you trust with your life. Be kind to them. Tell them the good things that are happening to you as well as the negative. Do your homework. Your doctor will know if you are taking a vested interest in your health.
Keep a journal. This will help you track your progress.
Find a joy. Whether this is art, crafts, reading, music, woodworking. Find something that takes you out of yourself and into a place of happiness.
Look into the future and visualize yourself beyond your disease, healthy and enjoying life.
Find a good massage therapist. They can help you learn to relax and help your body heal.
Talk to your body. Tell it what you want.
Read books written by Dr. Bernie Segal.
Get plenty of rest...this is time that your body has to heal.
With sunscreen on, go swimming. There is something very soothing about being in water.
I used art to express my feelings during and after treatment.
How have you dealt with any side effects of treatment?
Somethings were an immediate need such as nausea or headaches. Ongoing, I try to keep medications with me to control or be prepared for 'surprise events'. Because I can have diarrhea at any time, I have to carry Imodium, pads and an extra change of clothes with me in my car. I don't push myself to try and cram in everything that I can do in one day. I have become more regimented in my food, my medications, my bedtime, and establishing boundaries. I monitor stress in my life. I am more careful about exposing myself to germs and sick people.
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
Stop often and listen to your body. Treat it with the love and attention it deserves. Find a way to balance it's care with the other things you do in life.
If you have knowledge that you are predisposed for certain medical problems, use that knowledge to make precautionary measures to keep yourself strong.
Find a way to keep stress in-check in your life.