My Story
I’ve been very lucky with this disease, so far. I’m sure those who remember me just after my diagnosis, when my body was wracked with pain and the bad news was falling like rain around me, will never believe that I’m saying I’ve been lucky with my lung cancer, but I have been.
I’m not lucky to have it – I know that it’s presently incurable (I set up Save-Your-Breath.org in the hope of working with other individuals and organizations to change that situation), but despite worsening scans and darkening prognoses, I’ve remained largely asymptomatic with respect to the disease and have tolerated treatments, including two rounds of chemo, radiation to my left lung, now whole brain radiation, remarkably well.
In the beginning (September, 2008), I suffered severe abdominal pains while working on a client matter as a busy attorney in Washington, DC. My local hospital couldn’t immediately identify the source of the abdominal pain, but their scans showed massive tumors in my left lung and surrounding pleura. Much later, after numerous bouts of severe pain that would follow about an hour after eating virtually anything, the source of the pain was finally traced to one of my lung tumors that was pressing against a nerve where it entered my spinal column. Increasing doses of narcotics and other pain relievers held it at bay for a while, but the pain didn’t go away completely until the tumor was irradiated in February, 2009.
Of course, the cancer hasn’t left me with any easy course: in addition to the pain, my left chest kept filling with a pleural effusion that compressed my left lung to the size of a Hungry Jack pancake and pushed my heart closer to my windpipe than it’s ever been. Naturally, I spent some time in the hospital dealing with that situation (thoracentesis removed five liters of fluid in three days, with the first three removed in the first session), and I had to have a drainage tube inserted into my chest so that I could drain the fluid at home. (I had to be careful not to let my five-year-old daughter see me doing the actual drainage, but she knew that Daddy had to wear a special bandage on his chest and she was very protective of my “booboo.” Now, at six, she understands that Daddy has cancer, and she knows that you die from cancer. It’s a lot for her to deal with, but she’s making that connection on her own, with lots of watchful eyes and caring conversations from friends and family.)
Chemo, of course, wreaks its own havoc. If you’re facing it or going through it, listen to your nurses. (Your doctors prescribe, your nurses perform – it’s the nurses that give you the good dirt. You need to be armed with intelligence to speak intelligently with your doctors about your condition, and if Save-Your-Breath.org can help with getting you some good intelligence, it will have served one of its primary purposes.) There are truly wonder drugs out there that can minimize or completely alleviate many of the nastiest side effects of chemotherapy. Talk with your nurses about Emend, for example. It’s extremely pricey, but covered under many insurance plans.
So why do I consider myself to be so lucky? I have a deadly disease. I don’t know whether I’ll deteriorate and die within months or live another five, ten or even twenty years (I have my eyes on the twenty, but my doctors aren’t convinced . . . ) But I’ve realized something about survivability throughout this ordeal: “I survived” doesn’t mean “I’m cured.” It means, for me, I have another day. A day to live, to be up and about when I can. A day to sleep and dream and sit in the sun when I can’t be up and about. Life is for the living, and none of us knows what’s on the other side. But we all know, as Jim Morrison and the Doors sang long, long ago, that “No one here gets out alive.”
If Death comes to everyone and to everything that lives, then Death can’t be all bad, so I don’t worry about it – I never have, throughout my life, and I’m not about to start now. Rather, I feel kind of cocky: as the Scriptures say, “No man knoweth the day nor the hour.” But my doctors have given me a pretty good clue as to the probable cause, so that’s one big item I can pencil out on the Death watch list (lightly, of course – I can still get hit by a bus on my way to treatment . . . )
In July, 2009, I had a very good medical report: “no active issues at this time.” By late October, 2009, I had eight or nine quarter, dime and nickel-sized tumors that had metastasized to and grown up in my brain. Gee. Lucky?
Yes! I’m alive. I’m up early in the morning writing this blog entry to support an organization that I hope will outlive me by many years and help lead to a cure for this terrible disease. It’s not so much a fight as a simple enjoyment of the life I’ve been given – the hand I’ve been dealt, so to speak. So what if I’ll probably crash after my treatment this afternoon – it’s brain radiation, after all.
But if I could get a good report in July, after all I’d been through leading up to that report, maybe there’s another good report down the road. That’s what I keep looking forward to. But maybe there won’t be. Maybe all the reports will be bad and worsening. So what? I’ll take my one day at a time. I’ll make the most of it. Life is for the living, and I’m still alive. As for the rest, it’s not my thing – I didn’t make the world and all that dwells within it, and I’m not responsible for its continuing operation once I’m gone (although I hope to address issues such as getting your affairs in order in a future blog – the responsible lawyer in me won’t let me off the hook for the small bits of post-mortem issues I can control). I’m simply enjoying being a part of Life for as long as I’m here.
I truly hope, whatever your situation, healthy, sick, in pain or caring for someone with this disease, that you are finding some way – even a small way – to enjoy being a part of it too.