Congratulations! You’ve got cancer!
It came as a surprise to me. My family members have a long and colorful history of heart attacks and strokes taking them out. Cancer just wasn’t on my radar screen, especially at age 34 (shortly before my diagnosis, a radiologist told me I was too young to have cancer).
If you’re newly diagnosed, it might’ve come as a complete shock. Maybe you felt perfectly healthy. Maybe, like me, you were sick as a dog, but no one could figure out why.
It’s a shock to the system. There you were, in your perfectly imperfect life, doing your thing, doing the best you could, then The Big C comes to town and rocks your world. It’s an emotional tsunami ripping through your brain, tearing at your heart and maybe pulling your family apart. You scream, yell, cry (I did that a lot). Maybe you pray, maybe you curse God. Whatever works for you, if it feels good, do it and get it out of your system. Then move on, as best, and as quickly, as you can. Get your act together, brothers and sisters, because cancer waits for no one.
I’m a guy. Not real touchy feely. I like to think I’m empathetic, but if you’re too emotionally paralyzed to deal with the situation, come back to this blog when you’re up to it. I’m here to lay some practical advice on you, discuss issues and give my view point on things.
How did I become an expert? Am I a doctor or a nurse? I’m nothing that useful. I’m a lawyer. But I am a cancer survivor. During my treatment history, I’ve gone through six treating physicians at six hospitals in four cities in three states (in the interest of full disclosure, one of those hospitals is HUP, one of those doctors is at Abramson).
I was misdiagnosed for two years. My fevers and night sweats were blamed on infections. Pneumonia caused my coughing. The doctors were clueless as to my itchy skin. The real culprit (diagnosed with the help of a different radiologist) was stage IVB nodular sclerotic Hodgkin’s lymphoma. It’s a cancer of your lymph nodes. Those glands in your neck your mother would grope to see if had an infection (they often enlarge when there’s an infection). I was diagnosed in December 2000. About 7500 Americans are diagnosed with Hodgkin’s each year, about 1500 die of it.
There was Stanford V treatment (which includes five chemo drugs) and radiation. After relapse one, there was ICE and DI-CE, high dose chemo (BEAM) then an autologous stell cell transplant. After relapse two, there was Gemcitabine, Navelbine, Doxil and an allogeneic bone marrow transplant (complete with total body irradiation, the closest I hope I come to being inside a microwave oven). I’ve had chemo as an outpatient, inpatient and at home.
Along the way, there were: breathing problems, nausea, peripheral neuropathy, weight gain, insomnia, heart burn, constipation (so bad I tore a muscle where you don’t want to tear a muscle), diarrhea, skin burns, baldness (two or three times), exhaustion, bronchitis, the skin infection from Hell (in the last place a guy would want a skin infection), depression, mood swings and suicidal thoughts. Throughout treatment, I was on an anti-depressant and at one point I was taking steroids (prednisone) by the handful (120 mg/day). If taking that much steroids won’t F you up, nothing will.
I’ve had needle biopsies and surgeries. I’ve had a port and a Hickman catheter. I’ve lost track of all my x-rays, CT and PET scans. I’ve had blood tests by the score.
I’ve been treated at small, local hospitals you’ve never heard of, I’ve gotten second opinions at world famous cancer centers (one such opinion, seven year ago, was that I was terminally ill). I’ve been treated at major teaching hospitals. I’ve been seen by social workers, a psychologist and a psychiatrist. I had great doctors all along the way. I loved my nurses (I still correspond with my first chemo nurse, who first helped me nine years ago). The hospital food, not so much.
Was it all worth it? Absolutely! I’ve been cancer free (as far as anyone knows) since March 2003.
In a nutshell, my four keys to getting through cancer treatment are:
- Educate yourself,
- Make the best decisions you can,
- Take one day at a time, and
- Hope for the best.
In the future, I’ll expound on these themes, and God knows how many others, but for now I’ll let you off on an observation. The better you are at suffering, the better you will be at getting through this. If you don’t suffer well, this will be difficult. This ain’t no party, this ain’t no disco, this ain’t no fooling around.
Not only is there the physical suffering of the cancer, treatment, side effects, but of all the crap you might have to deal with. Family issues. Work problems. Insurance. Finances. The sheer volume of time you’ll be spending during treatment, not doing anything else productive. Hospital staff not as helpful or caring as they should be. Friends that disappear and clueless family members. You just have to get yourself through this.
If you can accept the fact you’ve got this cross to bear, you’re heading in the right direction. This cross will vary in size and weight from person to person. I wound myself up during my autologous transplant, fearing every side effect and infection in the book, and they never happened. So prepare yourself for some kind of cross, but don’t assume it’ll be made of concrete and covered in barbed wire.
OncoLink is kind enough to give me this soap box, but I want it to be your soap box too. Talk to me. Ask me questions. Give me comments. What should I discuss? What do you want to know? What makes you feel good? What pisses you off? What are your problems? What are your solutions?
Join me, brothers and sisters, on this internet extravaganza we call OncoLink. The engine is running and the parking brake is off. Where do you want to go?