Tuesday, August 29, 2017
To Chemo or Not to Chemo
When Jim and I were young, we both swore that should we ever be diagnosed with the Big C, we would refuse treatment. But then it happened. Jim got pneumonia that didn't respond to the medicine they gave him. His VA doctors ran tests and called him into inform him that he had lung cancer, the inoperable kind, the terminal kind. The Veteran's Administration doesn't mince words.
"If you have treatment, we might be able to buy you two years. Without it, you'll be dead in two months."
Two months doesn't sound like a very long time when you're only 44 years old. He said yes to the treatment and we started on a 19 month ordeal of chemotherapy (13 sessions three weeks apart), radiation (five times a week for 5 weeks), a heart attack (brought on by the chemo), isolation (due to an infected tooth and a low white blood count) and then more chemo.
At the time, none of this could be done locally so we made 100-mile round trips to the VA Hospital in Fort Wayne.
He was nauseated and vomiting much of the time during chemo. This throat had sores from radiation and he could only eat food like soups or pudding. He got so bone-tired during radiation that I had to feed him part of the time as he was too weak to lift a spoon. Of course, he lost his hair (which doesn't sound that important in the scheme of what all was going on but it is traumatic to the people involved. In fact, Jim told me if he died when he was bald, I was absolutely not allowed to have an open casket..
He was 6 feet tall and weighed 180 pounds when he was diagnosed. He weighed 135 when he died.
After the first series of chemotherapy treatments, the doctors told him that his tumor had shrunk so much that it couldn't be located on an x-ray. Yay, right? Not so fast. As I said, the VA doesn't sugar-coat anything. The doctors also said that if there was even one cell left, and that was a sure thing, then it would begin growing again.
The chemo was followed by the radiation. When that was over, they recommended more chemo. If I remember right, he had three sessions before the hospital told him, he was so weak, his body couldn't tolerate any more. He lived two more months.
All during his final months, I continued to believe that if I ever got cancer, I would refuse treatment. You never really know how you'll feel until you're faced with it. Life can be ironic.
In July of 2015, my dog tripped me and I fell down the stairs.
"Shit," I thought, "I hope this isn't one of those I've-fallen-and-I-can't-get-up scenarios."
It wasn't but I knew I'd broken some ribs. The pain from broken ribs is intense. You can't sit up or lay down or walk or breathe or laugh or cough without feeling as if lightning bolts are jagging through your insides.
After a few days, I went to the Redi-Med Clinic to get some pain pills. In order to prescribe the pills, they had to do xrays to see if I really did have broken ribs. I did.
Then the nurse came out and said, "we found a spot on your lung. We've made an appointment for a cat scan."
"Don't you think you should have asked me first?" I asked.
She looked startled, then told me, "well, if you don't want it, it's up to you to cancel it.
So, I did.
When I saw my family doctor, she said, "Vicki, you know my recommendation is that you have the cat scan."
"I look at it this way: if it's not cancer, then the cat scan doesn't matter. If it is cancer, it still doesn't matter because I don't plan to do anything about it."
The following May, I had what I guess you'd call an "episode". I woke up in the middle of the night panting for breath. I felt like a heavy boulder was sitting on my chest. I tried to go back to sleep but I couldn't so I finally came downstairs and made a cup of coffee, debating with myself about what to do. I knew I wasn't able to get dressed and drive myself to the emergency room. I didn't want to call an ambulance because I knew they'd ship me off to Fort Wayne. I didn't want to go to Fort Wayne. It honestly never occurred to me to call any of my friends though they all asked me why later.
So, I went and sat in my recliner and dozed off and on. The pressure eventually subsided but the shortness of breath didn't. I was watching the clock, planning to go to work but when the time came, I told myself, "Old Girl, you're fooling yourself if you think you can drive to Kokomo (45 miles) and talk to clients." So I called in sick.
I worked for another three weeks. My main symptom was exhaustion. I slept a lot when I wasn't working.
When I was young, in my family, if you got sick, your Mom always told you to go lay on the couch. They'd let that go on for a couple days to see if you'd get well on your own. If you didn't, they'd give in and take you to the doctor. What I did in this instance was sort of my version of that philosophy.
Finally, one day I was coming from one of the courthouses where I conducted intake for low income clients. I walked down the halls, panting, and got to the doors. I could see my car parked across the street.
I thought, "I can't make it that far. I'm going to collapse on the Courthouse lawn and make a spectacle of myself."
I forced myself to take a step and then another step and eventually made it to the car. The next day, I called my clinic and they told me to go to the E.R.
I was there for four hours having test after test, for one, the dreaded CAT scan and for another, an arterial blood draw which, if you've never had one, is nothing like a regular blood draw when it comes to pain. My little woman couldn't get her needle into my vein. She poked and prodded and changed its direction. She felt so terrible, she was almost crying. In the end, she said to go do my x-rays and she'd come try again in the other arm afterwards. That time she got it after only a few tries.
The doctor came in after he had all my results.
"Well," he said, "the spot on your lung is definitely cancer....and in addition to that....."
"Wait," I exclaimed, "you mean there's more."
"Yes, in addition to that you've got some congestive heart failure going on."
They gave a intravenous dose of Lasix. Lasix makes you urinate to get rid of the excess fluid around your heart and lungs.
The emergency room doctor advised me to see a pulmonologist.
I went home with a sheaf of papers the size of an encyclopedia. I threw them on the kitchen table and threw myself on the sofa. I never looked at them again.
The Lasix began to wear off and I was back to panting again. I decided to see the pulmonologist. I got the stack of papers from E.R. that were still on the kitchen table and, low and behold, there was a prescription for Lasix (actually Furosemide - same thing). My girlfriend ran to the drugstore to have it filled.
A friend took me to Fort Wayne where the pulmonologist was located (of course). He looked at all my paperwork. (The Fort Wayne Hospital is allied with the massive Parkview system, as is my home hospital in Wabash.
"Stage 3 lung cancer," he pronounced. "Do you want to tell me you your options?"
"No, I've already made my decision. No treatment."
He looked at my papers again. "I see you're a long time smoker."
"You're not going to give me a lecture about smoking now, are you, Doc?"
"No," he smiled, "I'm going to tell you to go home and do whatever gives you pleasure."
I smiled back. "Good, because that's what I was going to do anyway."
I quit my job the next day. It had been such a strain to keep going on when I felt so terrible and had so little stamina, that it was a huge relief to have the responsibility off my shoulders.
My family doctor had been on vacation but as soon as she came back, she gave me an appointment.
I love my doctor. She's the perfect doctor to have during stressful times, a friend as well as a physician.
She did some more tests and discovered my sugar was very low and so was my blood pressure. She took me off some of my medications. She sent me to the lab for a test for Potassium.
Turned out my Potassium was fine but I was extremely anemic. So she started me on iron pills.
I call them my miracle pills. I went from barely being able to walk across the room and napping off and on all day to feeling a lot like my old self. I couldn't run around the block but I stay up all day now. When I was so far down, I practically made the Walgreen's, which is two blocks from my house, my main grocery store. I just couldn't face walking around a large store like Krogers. After the iron pills, I could go to Kroger's again.
Of course, a lot of my friends tried to encourage to have the cancer treatments and if I'd had a husband or kids or anyone else depending on me, I might have. As it is, my mother, who'd had dementia and whom I'd retired once before to care of, died in 2013. My only child died in 2015. Now, there is no one who needs me to take care of them and I damn well hope no one ever has to take care of me.
I tell people that I feel like I'm in a boat, just drifting around, watching the sun and the water and the palm trees. I know my boat has a leak in it and some day it will sink but until then I'm enjoying my life. I feel fine right now. I have my pets for company; I plink around on the computer; I watch t.v. I'm still passionately interested in politics. I still live for the NASCAR races. I still love casinos. I can't wait for Outlander to start again. My friends come and see me.
When I compare my life to Jim's last 19 months of tests and treatments and infusions and hospitals, I think, I'm way ahead of the game.
I've never been afraid to die. Sometimes when I'm lying in my bed (I some times have to struggle to get up the stairs but my bedroom has been my bedroom since 1991 and it feels like my safe space) I think to myself, "I hope I die right here", then I close my eyes and go to sleep.