This December, I will have been working with cancer patients for six years at the Life Raft Group. I have held their hands in hospital beds, coached them on how to talk with their doctors, stood by their side at the weddings of friends, walked with them through haunted houses and comforted their loved ones when they had nothing left.
I have had the privilege to meet and work for patients who have responded well to treatment; who have the good fortune to be able to treat life as a gift and go on living with the knowledge that each day is precious, and those for whom treatments come and go, never offering the relief they pledge for long; for them, hope can be both a distant illusion and their best and only friend.
I have had the blessing of working with both kinds of patients and would not trade one second of my life, no matter how much personal pain it may have brought me.
Because of this, I have a unique perspective, shared by few, on cancer and the people it affects. In February, at age 62, my father’s prostate cancer recurred in his spine. With all my prior training, I made sure he had the best doctors treating him at one of the best cancer hospitals in the area, Memorial Sloan-Kettering Cancer Center in New York City.
Despite our best efforts, his cancer spread. To date, we have had to contend with two rounds of back radiation; brain surgery, back surgery & brain radiation, all within weeks of each other; chemotherapy, chest radiation and more back radiation.
We have dealt with and discussed issues I never expected to address this early in my and my father’s life. I have witnessed the severe mental strain on my family, while we each struggle to survive in our own way. Each day, I am faced with the possibility that all of this could have been avoided or perhaps delayed had my father received proper treatment earlier on.
His original doctor was very aware of how serious his cancer was when he had his first surgery and he should have immediately begun hormone treatments, but he didn’t. He waited.
My father was not aware of how serious things had gotten for him until they had gotten too serious to contain.
While I cannot blame anyone for what my father’s cancer has done, had he received proper treatment early on, we may not have had to face these issues this early, if at all.
During this time, and especially in light of this six year mark, I have had cause to look back and reflect on the patients and professionals I have met over the six years I have worked for the Life Raft Group and the nearly one year I have spent caring for my father… if I have anything left in me to give, it is the lesson that you should never be complacent with your health.
Educate yourself on the best practices, cutting-edge treatments and research out there. Make sure you are never ambivalent about a decision affecting your care. If you question it, interrogate your doctor until you are sure it is the right route for you. If you’re still not sure, get a second opinion and continue to get opinions until you feel comfortable with this decision. Any doctor worth his/her salt will tell you the same thing. If you continue to feel uncomfortable, take a leap of faith…but a leap based not on words that you hear but on you and your doctor’s best understanding of your disease.
A smart man dealing with his own health struggle recently said to me, “We wanted to be able to say at least we did everything we could, at least we don’t blame ourselves.”
I want to be able to say that about myself, my coworkers and every patient I come into contact with. In the past six years, I have built a family at the LRG, but it wasn’t until the struggle became personal that I realized how much I had invested in the lives of my friends here.
I have said it before— on the phone, in the newsletter, in person….take control of your own care and your own life. Leave nothing to the whim of others. I, and the LRG, will continue to stand by your side, but make sure your life stays in your hands and the hearts of those you love.
Note: Programs and campaigns come and go, but some things stay the same: the first and foremost mission of the LRG is to ensure the survival of GIST patients.
If you have any questions or doubts about your care and want our opinion, please call or email us at (973) 837-9092or liferaft@liferaftgroup.org.
If you do not see or consult with a GIST specialist, we strongly urge you to reach out to one. The GIST research world is ever-changing; GIST specialists are exposed to GIST trials, research findings and up-to-date GIST news on a daily basis. Specialists use this knowledge to make decisions about their patients’ care. In the fight against GIST, it is just as important to find a well-educated (in GIST) doctor as to educate yourself.
You can search the LRG’s GIST Specialist directory here.
