Wednesday, May 26, 2010

#170: Setbacks and Delays

I can't help smiling when I remember that night in the recovery room when I thought that Cancer had been awfully easy to lick. I half-expected them to pat me on the head and send me back to work. No such luck.

Just because the surgeons removed all that they could see doesn't mean that they got it all. There were cells outside of the main tumor, and it had reached the lymph nodes in my neck. I was going to need both radiation and chemotherapy to clean up what they might have missed.

The meeting with the radiotherapy oncologist was pretty jarring. She described the procedure to me, and told me about the side effects I should expect. Loss of taste. Sunburn like burns on my neck. Hair loss. Sores in my throat and mouth. Nausea. Lots of pain. For at least six to eight weeks. We scheduled my first appointment with the medical oncologist (the chemo doctor) and left the clinic on shaky knees.

The morning I was to meet the chemo doc for the first time, I got an urgent call from the Cancer center. Blue Cross had determined that my Cancer was a "pre-existing condition." My insurance would not be paying for any radiation or chemo. The lady at Lexington Clinic was very kind and assured me that they would find alternatives for me. Mrs P was working, but Mum was there in the room when I hung up the phone. She wept for my suffering. I wept for my humiliation. After a lifetime of hard work and playing "by the rules" I was being pawned off as a charity case. I blamed the insurance company. I blamed the man who fired me two years ago, costing me my life's savings and my comprehensive medical coverage. I blamed myself for trying to make a career in the arts where poverty was practically guaranteed. And I blamed God in whose image I had been made, reputedly.

Late that afternoon, the Clinic called to let me know that the University of Kentucky's Markey Cancer Center would accept me as a patient. They would be able to help me with the financial aid I needed. Actually, what she said was that they were big enough to absorb the loss of treating me. They had made an appointment for me. My treatment would be set back a week.

At the Markey Center I met Dr. K. He and his team examined me much more thoroughly than they had at the Clinic. They discovered a loose tooth. We would need to see a dentist about that. He also explained to me that because of the damage the therapy would do to my throat, there was a good chance I wouldn't be able to swallow for most of the time I was getting radiation. If that happened, I would need a feeding tube. Rather than interrupt my therapy to put one in, Dr. K recommended that we install the tube before my first treatment. Now I had a dentist appointment and an outpatient surgery to complete before radiation could begin. I still hadn't met a chemo doc.

As we looked at the x-rays together, the dentist was very kind and to the point. I had advanced periodontal disease, a chronic infection of the tissue connecting my teeth to my head. Radiation would destroy my saliva glands and compromise my immune system. The infection in my gums would spread to my teeth, even my bones. I could wind up losing my lower jaw. All of which would interrupt my therapy and give the Cancer a chance to gain a new foothold.

My teeth were shot. They all had to come out. The next day, if possible.

Another office. Another kind administrator explaining that payment would be expected at the time of treatment. Yes she understood that I would die without the procedure. Yes, she was very sorry. If we could pay half up-front, they would bill us for the rest. Mrs P scrambled to find friends and relatives who would lend us the money for the down payment. The next day, all my teeth were gone. And my treatment had been delayed another two weeks while my mouth healed.

I finally got to meet Dr. Arnold, the medical oncologist. She asked why I had waited so long after my surgery to start chemo. I tried to tell her the story without cursing. She and her team examined me. I had developed "Thrush," a fungal infection on my tongue. Mrs P said it was from all the antibiotics I had been taking. They would need to get that under control before starting chemo. We also needed to schedule a morning to have my feeding tube put in. I expected this to take about five hours. I'm not sure why.

Two mornings ago, I reported to the hospital. They sedated me before I knew what was happening. I woke up feeling as if I had been shot in the belly. In theory, the idea of installing a hose through your skin and directly into your stomach is incredibly cool. I even found videos of the procedure on YouTube. In practice, having someone poke a hole through the muscles of your abdomen really, really hurts. You know all those exercises in the gym that are designed to develop your core? They're there because you use the muscles around your middle for almost everything you do from getting out of a chair, to drawing a breath, to using the bathroom. The surgeon poked a hole in my core, and left about 14 inches of rubber hose hanging out of it. Ouch. I spent the night in the hospital, eating Percocets like M&M's.

Today, I got the call from my medical oncologist, Dr Arnold. We're going to have to delay my treatment while I recover from this "minor" procedure. Chemo and radiation were scheduled to start tomorrow, now they will not begin until June 7. Ideally, radiation should start within four weeks of surgery. My operation was six weeks ago.

I'm really scared tonight. I'm afraid of what is happening inside my throat while we figure out which specialist gets the next crack at me, and who's going to pay for it. I'm afraid that the pain I'm feeling now is nothing compared to what I'll be feeling once therapy starts going full bore. I'm afraid that the steady hold I have kept on my emotional health so far could slip at any time turning me into an angry SOB lashing out at the people who love me so much. I'm afraid God has forgotten me and my family. I'm afraid that, as bad as it's been, we "ain't seen nothing yet."

I wish I had a glib little spiritual bonbon to throw in here. Some soothing bumper-sticker theological insight that would make us all feel better. But the truth is, I haven't got a thing. Tonight, I'm just scared. And that's going to have to be enough for me. There aren't any easy answers to be found. So I'll just have to sleep on the hard questions for a little while longer.


  1. My friend, I can not begin to imagine what you are going through. I can tell you though that there is a lot of love coming your way. Your family and friends are sending so much love to you. I hope that gives you some comfort during this difficult time.

  2. I have read all of the posts from the May entries. This one and the previous one have me bawling like a baby.

    I'm afraid God has forgotten me and my family. I'm afraid that, as bad as it's been, we "ain't seen nothing yet."

    With what my husband and son are going through I do understand. I do understand ......
    I haven't read on but I sure know what the feeling is when you wonder why God thinks we are strong enough to handle the situations. We may never understand and as upset as I can get over what you, John and Paul are going through my strength comes from Him.

    God bless you and please accept my hug as it comes through cyberspace.


  3. I am speechless. Your honesty is piercing.


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