Friday, March 19, 2010

Narcotics & craziness (by Suzie)

I’ve appreciated a good narcotic since I had minor surgery as a teenager. I was given Demerol. By then, however, I also had experienced a Demerol-addled, gun-waving neighbor. I joined his family for a trip through the West in an Econoline van fitted with old bus seats. In San Francisco, he threatened to shoot anyone who uttered a word. We kept quiet even when he took a sharp turn, one seat upended and three of us fell in a heap. Imagine seeing SF for the first time – in silence.

Decades later, after I was diagnosed with sarcoma, some friends asked if I could get medical marijuana. My standard reply: “I can get better.”

My jokes about narcotics troubled other friends. Even a casual mention of Vicodin would elicit concerned-parent faces and comments about the dangers of drugs. When I’m in pain, the last thing I want is a lecture as if I’d been held captive in a religious cult and never heard that narcotics could be addictive.

So many people are so worried about drug abuse that they forget the many blessings of narcotics. Can’t we hold both thoughts in our heads? Must we assume that everyone is, or will become, addicted?

Until I had my bladder removed last month, I was having recurrent bladder infections resistant to antibiotics. Vicodin helped me through. During my six-hour surgery, I was glad that I didn’t have to bite on a bullet or take a shot of whiskey.

Afterward, my Sufentanyl got yanked because I was itching like crazy. I then got Dilaudid. Forget the itching; I was just crazy. Dreams and reality mixed. Never again will I tell someone to relax into the drug, just float, let it take away the pain, etc. From Dilaudid, I got switched to Toradol, Ultram and finally Vicodin, my old friend.

I wrote this post drug-free.
More thoughts from the hospital: I had a peripheral line in my right wrist, an IV in my left hand, a long bruise on my left wrist where the arterial line had been; a hydra-like, triple-lumen central line dangling from my chest; a nasal-gastric tube with dark stuff that I thought was food going into my belly; a JP drain, like a little football, tethered to my abdomen; and a pouch glued to my abdomen, with two stents emerging from my stoma like sticky stamen, and a tube connected to a catheter bag. I felt like a marionette.
I like to sleep on my side. Try that when you’ve got an entourage of tubes that must move when you move. Because I was too weak, staff and friends used sheets and pillows to roll me over on my side. I felt like a beached whale.
Even if your hospital is terrific, schedule people to stay with you, at least until you can get up on your own. Even if you have caring family members, rotate them to reduce burn out. You may want a drink of water, or your TV remote may fall. You can’t call the staff all the time, and if you do, don’t expect them to come running unless you say you're bleeding from one of your lines, as happened to me.
Your caregivers can keep a diary, marking the date and time when stuff occurs. If you’re in a drug haze, a diary can help you make sense later. On my worst night, I got new medication to reduce the madness, and the nurse told me to give it 30 minutes to work. A friend had to keep reassuring me because time had stood still. Later, when I read the notes, I understood what happened.
For those tempted to argue with patients, remember: Who is crazier, the crazy person or the person arguing with the crazy person?
A patient loses so much control in the hospital. Let her make what decisions she can; don’t call her a control freak.
Reading get-well cards signed by a lot of people reminds me of the signatures in a school yearbook. Among all the get-well-soons, I expected to see “Have a great summer!” (But, hey, keep the cards and gifts coming!)
At home, I have a grabber so that I don’t have to bend down. I channel a friend from the cancer center who died a few years ago. His parents had had an ice-cream store on the boardwalk of Ocean City, Md., and he became an expert at the machines that lower a claw into a bed of prizes. What is my prize now? Getting dirty clothes off the floor.
While recuperating-through-working, I came across this quote from SARC, an unimpeachable source for sarcoma information: "You can’t get sarcoma from eating the wrong foods, making love, or from insufficient exercise." Let the party begin!