Living in the claws of a monster
When cancer is a housemate, pain and anxiety move in, too. Tough decisions made, staffer Barry Bradley and his wife open the door to a new kind of help.
By BARRY BRADLEY
Published November 27, 2005
On the stereo, Yo-Yo Ma is playing his cello. In the tiny space between the side of my leg and the arm of my easy chair, our 18-pound cat, Phyllis, is sleeping as only a cat can sleep.
As I tap away on my laptop computer, I ponder what could be a life and death decision. It's hard enough to think about, even harder to talk about, but writing about it is like digging your heart out with a spoon.
I've opted out of radiation treatments. This is a critical decision, and I haven't made it lightly, but I think I'm making the right choice. There was sufficient anxiety over turning down a treatment that could extend my life.
But I finally got three of my doctors to agree that radiation probably wouldn't give me much, if any, extra time. In the meantime, the side effects would be miserable. Yes, I could put up with the side effects if there were a chance of living an extra six months, or a year, or even longer. But why suffer through it if I'm going to die at the same time, with or without radiation?
Don't get me wrong, radiation works wonders for some people; it's just that in my case the cancer has already moved into the bone, so radiation is not a viable option.
My wife, Jean, who works for hospice, comes home all the time with stories of patients who have been overtreated to the point that their remaining days, weeks or even months are spent in misery. She never mentions patients' names, of course, but these poor people have been burned by radiation and poisoned by chemo in an endless cycle, trying to stay alive one more day, one more week.
If that's their choice, that's fine.
But I don't want to go out that way.
Besides, doctors have been known to be wrong.
I'm feeling pretty good right now. And I'd like to feel this way as long as possible.
The doctors say I have about three months.
A very optimistic prognosis would be six months.
I'm not quitting. I'm just running my own life, as I always have.Hospice
I'm under hospice care now. I have a doctor, a nurse, a social worker, a chaplain and an entire team of caring experts who stand ready to make the transition from this life to the next as comfortable and painless as possible. More important, they finally have my pain under control most of the time, which is a blessing. They even deliver my medications.
They are constantly monitoring me and my medications. On the pain scale, where zero is no pain and 10 is the worst pain you can stand, I used to live with a 7 or 8. Now I'm down to a 2 or 3. I'll probably never see a zero again, but that's okay. I've gotten so used to pain that a 3 or 4 is a gift from heaven.
On regular days, I think, God makes ordinary people like me. But on special days, he stops the assembly line and makes hospice and oncology nurses. They are caring, comforting, gentle . . . special. At least once or twice a week, one of the hospice workers calls or comes by just to see how I'm doing.
That's when they usually catch me splitting wood for the fireplaces, something I'm clearly not supposed to be doing because my bones are so brittle. But I'm not going to stop. I'm still going to fix things around the house, chop wood, tinker with my car and take on any project I want . . . as long as it gets on Jean's nerves. She wants me to rest. I don't. I'm not made that way.
At this point, I'll let Jean put it in her own words:
There's a fierce monster living in our house. He will suck the blood out if you get too near. He is also a thief. He robs you of your sleep, your finances and your well-being. He is self-centered. He wants you to think only of him, every waking moment.
His name is cancer. I know, because most of the time I dread coming home because he is there, waiting, lurking, stalking behind me into every room. He wants my undivided attention.
This is my analogy of cancer. This is not just a disease, a sickness that can be cured by taking two aspirin and calling the doctor in the morning. This is a dangerous, debilitating creature that can move into your home, and there's nothing you can do about it.
I'm not the chosen one with this disease; it is not eating away at my bone. It's eating away at my heart.
Barry and I have had this unwelcome guest for 10 months. Barry has had surgery, six months of chemo and now there's the fact that radiation will not be a curative. His physical and mental pain through this fight has been a roller-coaster ride of enormous proportions. Once you're on this ride for life, you seldom get off, yet somehow all the mundane, everyday duties like paying bills, cleaning, cooking, working have to get done, while all the pleasures and fun parts of life take a back seat.
We reached our rock bottom three weeks ago. Barry could not go on with his battle any longer, and I could not watch him go through misery every day, so tired of fighting the pain without relief from the medication that was supposed to work. A fellow chemo patient said a glass or two of red wine made his chemo symptoms more bearable, so Barry decided to try it. Soon the wine turned to scotch, and that only made the monster stronger. So he quit.
It's amazing to me that I never thought of calling hospice for help. I work for the Hospice of the Florida Suncoast and just like a plumber with a leaking sink, I had my own sink in desperate need of repair.
Barry conferred with his oncologist, his radiologist and his pulmonologist, and they all agreed Barry should be referred to hospice.
Barry is now a hospice patient. His pain is being properly managed. The hospice doctor is determined to keep Barry on a pain plateau . . . without him losing his writing or cognitive abilities. Hospice is only a phone call away, helping us to keep the monster caged. Life isn't perfect, but it has definitely improved. We think of our hospice team as our extended family. They care, they listen, they truly understand. I can reach out and talk to someone 24 hours a day. I need this support because at home I am the wife, not the knowledgeable hospice professional. I have moments of fear and anxiety knowing my life is going to change. I'm angry. I can't picture life without Barry.Preparation
There are certain things that must be taken care of while there's still time if you're someone in my shoes:
See a lawyer to get a living will, a power of attorney and all the paperwork necessary that spells out in detail what you want in your last hours.
Aside from your Last Will and Testament, of course, you'll need a Durable Health Care Power of Attorney and Designation of Health Care Surrogate. You can also specify, which I did, not to be kept alive through any artificial means: no feeding or breathing tubes. I will not be in any pain, I will have warm baths and massages, and I can specify who will be allowed in the room, pictures of loved ones by my bed, even the kind of flowers I want in the room, along with a host of other details. In short, hospice will do virtually anything to help me make this transition on my terms as comfortable as possible.
(I've never heard of anyone requesting a mariachi band, but it's bound to happen.)
Also, find out exactly which bills have to be paid by your surviving spouse. If a credit card, for example, is in one name only, the surviving spouse is not responsible for paying it off. There are many other critical details that only a lawyer can tell you.
If you're still working - or on disability, as I am now - get with your human relations department and find out exactly what must be done at death. There are insurance, 401(k), credit union, pension and a host of other benefits, depending on the company, of course.
And costs can be ruinous. I have chosen cremation, but renting an appropriate location for a memorial service can be expensive.
I have a plot at Bay Pines Memorial Cemetery for a full military funeral, so that will save us some money. But a regular service can easily cost $3,000, and after that the sky's the limit. Plan for it now. You'll save a few dollars by shopping around beforehand. I know it sounds maudlin, but it has to be done.Day to day
I can feel myself declining day by day, week by week. Projects I used to do without a thought are getting harder and harder. The fatigue is extreme.
To keep everything functioning, I take nearly 50 pills a day. I sleep with tubes of oxygen up my nose every night, and sometimes it's all I can do to heave myself out of bed in the morning because of the bone pain. I walk with a cane, and I'm supposed to park in a handicapped spot.
The other day hospice brought out a wheelchair.
I stuck it as far back in the closet as it would go.
Editor's note: Two days after Christmas, St. Petersburg Times editor Barry Bradley was diagnosed with lung cancer. He had surgery to remove part of his left lung, followed by six months of chemotherapy. He was hopeful that the surgery and the chemo would be a cure. It wasn't. This is the sixth installment of his fight against a killer within. To read his earlier stories and some of the letters he received in response, please go to www.sptimes.com/bradley