'My cancer diagnosis: What I wish I'd known' – James Neustice
April 23, 2013 | by Wayne Lewis
One in a series of stories asking former patients to reflect upon their experience ...
For James Neustice, what began as severe back pain at the age of 23 quickly spun into a whirlwind of blood tests and doctors' visits — and ultimately led to a life-threatening diagnosis: a kind of bone cancer known as chondroblastic osteogenic sarcoma. That diagnosis was the beginning of seven hard-fought years of treatment.
Good thing he had City of Hope on his side. Now cancer-free more than a decade after his diagnosis, Neustice wants to share what he learned with others who must confront cancer. He has his own records from the time to draw upon.
“Through it all, I have made lists, lists upon lists and even more lists,” he said. “Lists about what to eat, what to drink, what I will stand up for, what I am doing after this chemo treatment, what I am doing during that chemo treatment.”
We asked Neustice to look back at the time of his diagnosis and to ask himself what he knows now that he wishes he’d known then. What wisdom, soothing words, practical tips or just old-fashioned advice would he give his newly diagnosed self?
1. You are not a number. Never look at the odds.
Doctors are required to tell you all the statistics they have on your cancer. So sometimes you will hear something like I did: “You have a 50 percent chance of living for five more years.”
2. Bring someone with you to every doctor’s appointment.
Bring someone who is aware of your illness and wants to learn more about cancer; someone who will ask questions when they don’t understand something. Two brains are always better than one — plus your brain is going to be soaking in chemo poison. Sometimes you are going to want to leave the room. Even ask your doctor if you can record the appointments so you don’t miss anything.
3. Support your supporters.
We all have family and friends who are going to be there by our side. Your support structure is important. They want to help you. But when you are feeling better, get out and spend time with them.
My cancer fight went on longer than the majority of my support structure could handle. I fought for seven years of my life. The only ones left to spend time with me were my parents, my brother and sister, and two friends. I think if I focused on spending healthy time out with other friends, it might have made a difference in who was still there at the end of my fight.
4. Drink as much fluid as you can, in and out of the hospital.
There have been major advances in chemotherapy and in medicines to fight nausea. You will learn which medicines help the most and how to time them to give yourself 24-hour coverage to help keep you from vomiting.
But this is cancer. You are going to vomit. If you refuse water and food, you will never in your life feel something as painful as trying to vomit up your entire stomach because you have nothing else to bring up.
Keeping yourself well hydrated also will allow the chemotherapy to move effortlessly to where it needs to be in your body. Then, when your chemotherapy session is over, it will help empty your system of the drugs.
5. You can fight until your own lights shut off.
This piece of advice is all about what’s inside of you.
Yes, this will be the hardest trial of your life. There is absolutely no question of that. All the medicine and doctors in the world will only do so much. You have to be in this fight to the bitter end. You have to realize that you will get to a point where you have never felt worse in your life.
When you get to that point you have to wake up the next day and keep pushing forward.
Chemotherapy and radiation don’t choose which cells to destroy. They attack them all. Cancer cells are structurally weaker than normal cells in the body. Doctors give you round after round of chemo, trying to bring you to a point where you are at your weakest, so only your strongest normal cells are alive and all the cancer cells are dead.
Whatever shape, size or sex you are, you are now a warrior. You fight until you can’t fight anymore.
After seven years of intense chemotherapy, I fell into a coma. I fought until my own lights shut off. When I woke up, I never had another chemotherapy session again and now I proudly say it’s been more than five years since I woke up, reborn, A NEW SURVIVOR.