Cancer reduces you to your bottom denominator and this is where the rubber meets the road. Pain doesn’t show up on x-rays or blood tests so the medical community uses a pain measurement scale probably conceived by a twenty-something engineer in 1685, who never experienced anything worse than a hang-nail. You are given a form to fill out with questions like: “On a scale of one to ten, how bad is this pain?” You try to remain calm as you visualize inserting the form, pencil, and clipboard into the left nostril of your medical technician. The experienced patient, however, knows this action could delay treatment and has perfected the art of self-control. You gently explain that you aborted your dream vacation in Tahiti, on which you spent your life savings, and arrived via Medi-Jet because your pain is NINE THOUSAND, SIX HUNDRED AND THIRTY-FIVE!! So if he would please hand you the morphine button immediately, you promise not to remove his Adam’s apple with your fingernails. (Remember to smile endearingly.)
My personal pain scale is clearly defined and quickly understood by all medical personnel: Does this hurt more or less than smashing my hand in a car door? I’m a double-primary cancer patient with Grave’s/Hashimoto’s, arthritis, twenty-four visits to the operating table and 17 years dealing with chemo. Pain consumes every nerve, molecule, muscle and bone of my body. My coping methods involve mental distraction (such as my passion for oil painting), mental discipline, and a tricky regimen of medication. Fatigue exacerbates pain, so I rely heavily on exercise, deep breathing, green tea, and various alternative therapies to combat fatigue. I reject depression and drugs which turn me into a dizzy, sleepy zombie.
Everything you can do to maintain a sense of normalcy is critical, so try to stay involved with activities you did before your illness, even on a limited basis. If you focus inward you just swim around in the darkness and terror of pain – it’s a death spiral. Open yourself up to the world. Put things on the calendar that you have to perform to and you’ll be surprised what you can accomplish. You must challenge yourself.
My body responds immediately to stress. For example, if my computer acts up while I’m working on something difficult and time sensitive, my skin burns white hot, my head spins, and my pain will quickly worsen. Stress comes in a wide variety of elements, so I try to manage the atmosphere and environment in my life. Laughter is the medicine of life. It keeps your spirits high and helps brighten the spirits of those around you. The same rules apply no matter what personal crisis you face.
Some things to think about:
* Take control of your life and don’t let anxieties about your disease overwhelm you.
Look your crisis in the face and declare war – don’t cower in fear.
* Exercise is paramount to maintaining strength and stamina. Nothing makes you feel
alive like hearing from muscles you haven’t used in a while!
* With proper medication you can find relief and regain quality of life. The
alternative is a negative spiral of denial or thinking that nothing can be done. Push
your health care providers to dig a little deeper for methods to manage your
pain and help you be functional. They are overloaded and sometimes reach
for quick answers and standard therapies. Don’t hesitate to consult with other doctors.
* Deep breathing exercises can help clarify your thinking, reduce stress, and remind
you that you are not the illness. You may be living with a medical condition, but you
also have a life. Your pain shouldn’t define you.
* Make plans with friends even if you don’t feel up to it. Later you’ll realize the great
mental diversion and emotional benefits.
* Know your body and negotiate your pain threshold.
Even though I feel like I’ve been hit by a truck most of the time, I dig deep for discipline and muster determination to continue my long-time passion of oil painting. I continue to write and speak at various cancer events about courage, joy, and living with metastatic disease. I never thought I’d live to see grandchildren, so I cherish being with them. Try to embrace the spontaneous joy and free spirit of a child. These activities help me feel alive and provide vital mental distraction.
Yeah, it hurts – so what else is new? I have things to do.
by Fran Di Giacomo, PHD (Perpetually Hairless Dame) artist, and author of
I’d Rather Do Chemo Than Clean Out the Garage: Choosing Laughter Over Tears.