Sunday, September 25, 2011

What's Next?

It is interesting how, having come through the fears of being a person with cancer, of becoming old, of being dead – and receiving assurances that the cancer can be cured, the aging is inevitable and the dying isn’t going to happen just yet – I’m now focused on the process of being ill and getting well.

I didn’t plan this out. I didn’t consciously move from one stage to the next: it just happened.
This weekend I’ve spent a good deal of time pondering why I’m sleeping all day (and not all night), how serious the doctor was in her orders about my digestive tract, and why the pains have changed location, shape and sensitivity? And why my diet has changed.
I don’t need to bore or disgust, but one of the biggest challenges during an illness in which one consumes a strong narcotic for pain is keeping the digestive tract “regular.” “Once a day,” the doctor said, quite adamantly. I have to go see her Monday! What if I can’t – Wait! Stronger drugs!

The knee has hurt pretty much from the beginning of this process. Now, it’s like there’s a metal ring on the left knee, and it hurts like hell if I touch it. What if it – Wait! Stronger drugs!
The principle lump has enlarged and gotten harder. There is some sensitivity to the touch, but no redness (yet). There is no radiation of pain from the lump to further down the leg – though I’m sure the pains are all related and I’m counting on all of them disappearing when the lump does. There is some pain on the backside of the thigh – which I’d not felt before. What if it can’t – Wait! Stronger Drugs!

Dr. Perez-Tamayo has prescribed stronger drugs for me, and told me what over the counter meds I should take and generally assured me that we can get this pain under control. She’s mostly right – though one of the prescriptions she’s given me isn’t doing much good. I wonder if the pains are going to get worse and the drugs are going to have to get yet stronger?

If they do, that’s OK. I’ve become accustomed to weird dreams and half-awake hallucinations. One of my current favorite pastimes is to distinguish between hallucinations and reality. (The hallucinations aren’t so bizarre that they’re easy to distinguish.) Trying to remember what I’ve done and what I haven’t done is a second favorite pastime.

Then there’s appetite. I don’t feel nauseous, but I don’t much feel like eating. That’s probably OK for right now, since I’m not doing much in the way of physical activity. I have a recipe from M. D. Anderson Cancer Center for a protein drink. I should learn to make it and consume it to make sure I’m getting good nutrition.

One of the strangest parts of this is coffee.

It seems that it affects me more now than it ever did. Coffee at 5 pm didn’t used to keep me awake. I had to drink some after 9 pm in order to be awake after midnight. Now, a cuppa after 5 pm means at least several extra hours of tossing and turning at night.

Yesterday I had only one cup of coffee. Day before two, but didn’t finish the second cup. Today I’ll probably have two. It doesn’t taste as good as it used to. That makes me sad. I mean, we’re going to talk “Svenskhet” in two weekends, and what is a Swede without coffee – strong, black coffee?

The family tells a story about Farfar and coffee. After he retired and sold the farm to my uncle Teodor, he and his wife stayed in the house. Farfar was going blind. But he got up first every morning and started the coffee boiling. From “morgonen till kv√§llen” he sat in the kitchen, smoked his pipe and drank that boiled coffee.

I may be shaming my whole family by giving up on coffee. Then again, once we get past this treatment I’ll return to my regular coffee habits.

I guess we can’t predict, so I’ll just have to include that on my list of things to watch while journeying toward health. No stronger drugs needed!

Sunday, September 18, 2011

The Truth about Me and Cancer

I didn’t tell everything I knew when I knew it.

I knew on Monday that the lump was cancerous. Dr. Rosenthal’s office reached me Monday morning and the person on the phone told me. I couldn’t tell anyone else right then. I delayed until Wednesday when I had an appointment with the oncologist in Salina. Because I’d told everyone I was going to the oncologist on Wednesday, I knew I couldn’t postpone beyond that date, but I needed to postpone to that date.

I just couldn’t bring myself of see me as a person with cancer. Cancer was something that only happened to other people. It couldn’t happen to me. No one else in the family had cancer. I was the first, the only one. Not a distinction I cared to have.

Not only that, I had come home from church Sunday after trying to sing the first hymn. I’ve found I can’t stand still long enough to sing the hymns. Thus, I’ve decided to sit during worship, which I also can’t do very well – both the seats in the chapel at college and the pews a Bethany Church are very uncomfortable to my leg.

But when I try to sit during the singing of the hymn I find myself unable to sing. I pretty much get on the verge of weeping. Last Sunday I came home and did my share of weeping.

I was weeping because church has been the center of my life since I was a young teenager. My earliest joy was to be an acolyte at Luther Memorial. My cousin once said to me, as I wandered through the basement in the black cassock, “That looks good on you, you thinking about becoming a Pastor?”

Church was central to my life even when I was an undergraduate and didn’t get to chapel or Sunday worship on Zion very often. The two most influential people in my young life were Roald Tweet of Augie’s English Department and Dick Swanson, the campus pastor. Church remained central to me during those periods when I was on leave from call, the late 80s and the late 90s, early 21st century. Church remains central to my life, even though the Institutional Church has decided that they neither want to nor wish to have me on the role of clergy.

Now I can’t go. I can’t sit in the pews. I can’t stand for the hymns. I can’t sit for the hymns, I just can’t go. I end up crying.

That’s a major shift in my identity. Major.

When I got the news Monday I couldn’t bring myself to admit that I had been told that
the lump is a sarcoma. I could not face the idea of me as a sick person who has cancer and may lose a leg to cancer, who certainly has difficulty moving because of cancer, who could lose a life to cancer. I was not ready to deal with that. I’m still not ready to deal with the could lose a life to cancer, but I suppose I’ll work my way there.

Here’s the thing.

I don’t feel brave. I don’t feel like a fighter. I don’t feel like I can do this.

When I was in junior high (though we didn’t call it that) I actually tried out for the Lane Tech Cross Country Team. All I had to do was complete the course in the top ten of the runners. I had friends on the team. They stood along the course and cheered me on. About three quarters of the way my will gave out. “I can’t do it,” I said, and dropped out.

My heroes in life have faced this far better than I. At least their public faces have been far better than mine. Cardinal Archbishop Bernardin of Chicago faced his demise with grace and dignity. Walter Wangerin faced his cancer with new insight and depth of feeling. Me, I’m afraid that I’ll have neither dignity nor insight because of this illness. I’m afraid I’ll repeat my daring don’t of so many years ago – get within sight of the goal and quit.

I start radiation therapy tomorrow. The CT scan of the chest and abdomen was ambiguous. The PET scan had no evidence of spread of the cancer. I’ll stick with the more optimistic until I hear otherwise.

Tuesday, September 13, 2011

Another Doctor

I'm off to another Doctor, this one in Salina, tomorrow.

I'm happy about the progress, because I should be able to get the treatment started in the next two weeks.

What I'm not happy about is the clinic's insistence on payment. It's the first document the clinic forces you to fill out and the last document you're asked to sign. You have to sign off saying that you realize that if your insurance company doesn't pay you have to pay up front.

This insistence upon getting as much money out of the suckers as possible was the thing that was so off putting at the MRI clinic. I intend to pay my portion of the bills. But what will the clinic do if I can't pay the bill and if the insurance company refused to pay the bill?

This insistent demand for money makes me even more convinced that what we need is single payer!