#213: Side Effects

Shakes. That's what I've got today. One of the drugs that comes with my chemo treatments is a steroid that tastes like peaches. I think that's the one, anyway. It really hypes me up. This is a good thing. One of my friends warned me that the steroids turned him into a real jerk. They just make me annoying. I finally wore Mrs P out with my fidgeting and chatter so she put herself down for a nap. I'm typing, but my hands are really shaking. Don't think I could handle a teaspoon full of soup right now.

I've been very lucky with side effects. I appear to have a sunburn from my cheeks down to the middle of my chest. That's from the radiation. Also the mucosa thingy I've described. Nothing earth shattering. Fungal and other biotic infections that are pretty quickly killed off. Oh, and everything tastes like dog butt.

My chemo drug is called Cisplatin. It's a pretty old drug, but still effective. The list of side effects is daunting. I've had only the highlighted ones.

•Nephrotoxicity - causes damage to the kidneys

•Neurotoxicity - causes damage to the nerves
•Nausea and vomiting - one of the most likely to cause severe nausea and vomiting
•Ototoxicity - hearing loss which is currently not treatable
•Alopecia - hair loss, not a common side effect
•Electrolyte imbalance - causes various problems with cell operation
•Decrease of blood cells in bone marrow
•Thrombocytopenia (low blood platelet count)
•Leucopenia (low white blood cell count)
•Myelosuppression (decrease in bone marrow effectiveness)
•Changes in how food tastes
•Frequent diarrhea
•Numbness in the extremeties
•Extreme fatigue
 
Today I went back into the infusion center to get a shot of something whose name I didn't catch. Grace, who only called me "Hon," today - I was a little disappointed - told me the name then mentioned that the syringe full she was about to give me cost $6800. I kind of blacked out after that. The drug is intended to boost the functioning of my bone marrow and to get my white blood cells back in business. Grace really is a good nurse and an artist with a needle. I fled absolutely nothing as she stuck me in the left triceps and injected the mystery drug. Some people tolerate it pretty well. Others develop flu-like symptoms including aches that may be severe enough to require breaking out the Percocet. I don't want to be sick tomorrow. I want to go to the park to see The Merchant of Venice tomorrow night. That's the final dress rehearsal and I'm trying to avoid the really big crowds later in the week. Cancer is all about adjusting. And watching Shakespeare stoned isn't the worst thing in the world. I can think of several productions I've seen that would have been greatly improved by a few pain killers.

We took a trip to the Wal-Mart today. I prefer Meijer, but didn't feel up to the cross-town drive. Since we needed both groceries and medical supplies, we sort of walked cross-town instead. Water was in one corner of the store. Isopropyl alcohol and Ensure was in the opposite corner. Naturally there is no path "as the crow flies" from one end of the store to the other so we went arooooound. Twice. By the time we hit the check out line, I was pretty beat. We had a coupon for Ensure which our cashier forgot to scan. She looked pretty lost when we pointed it out, so we volunteered to go over to the customer service desk. Since that's my station at Meijer, I spent the whole time critiquing the disorder and the cool behavior of the person behind the desk. I would have treated us much better. Just sayin'.

Back home then, a two can tube feeding, and here to chat with you for a while. Someone posted a great scripture on the Motley Fool today. I loved it so much that I put it in my bio on this blog. I'll close with it.

We are afflicted in every way, but not crushed; perplexed, but not driven to despair. - 2 Corinthians 4:8

AMEN!
Peace,
pennsy

#206: Change in the Treatment Plan

I saw more doctors today than I did all of last year, I think. One of the things I didn't know about cancer treatement is they you don't actually have a doctor, you have a team. There's the surgery team, the radiation team, and the chemo team. Before I started at Markey Cancer Center the surgeon was the lead, along with nurses, nurse practicioners, radiology techs, my family doctor. Once the surgery was finished, it was off to the big leagues with a medical oncologist, oncological nurses, med students, nutritionist, pharmacologist, on the chemo team. Then on the radiation side there's the radiological oncologist, physicists, nuclear medical technologists, associates, residents, med students, and the nurses and nurses assistants who weigh me, draw my blood, check my history, and generally make me feel better. I think I was touched by 15 different medical professionals today. They palpated my neck, drew blood, shined lights down my throat, I don't know what all else. Mostly, they encouraged me. We're almost half-way through, and I'm doing great.

The bad/good news is that my white blood cell count is a little down. That combined with the chills I've been experiencing had them concerned enough to postpone my chemo until Saturday. They were concerned that this might disrupt my independence day celebrations. Screw that. I'll celebrate when I can eat brats again. Meanwhile, it's back to the radiation table. The good news part of this equation is that they are eliminating my last chemo course. I'll be having only this one on Saturday, then the radioactive team will bring it on home.

I learned a few things about my throat today. What I have is called "mucosal denudation." Mucosa is the slippery skin inside your mouth. Well inside most of you, actually. Denudation means what it sounds like: stripping away. What's happening to my throat is that the skin is cooking away because of the radiation. It's as if I had sunburn on the inside. That's why my throat only hurts when I use it. Swallowing is like rubbing two sunburned arms together. They gave me some analgesic mouth rinse to use, and also some more antibiotics to try to get my blood counts back in order. I think that's all the new meds. It's a little hard to keep track. I'd be lost without Mrs P.

Someone from Tennessee sent me a lovely gift today, a CD that I'm enjoying right now. Trouble is, I don't recognize the address or the signature. I'd love to thank you personally, but if you'd rather not, I'm thanking you here.

#178: A Good Day to be Alive

I experienced my first chemo side-effect yesterday and it was a heart-breaker. Mrs P made herself a grilled cheese sandwich. As I made my way toward the kitchen, the cooking odor from that most comfortable of foods hit me like a cloud of poisoned gas. A wave of nausea knocked me a step backwards and I felt as if I might faint. Over a grilled cheese sandwich! If she had made tomato soup with it I may have been struck dead on the spot.

Consequently, I have forbidden Mum to make pierogi. Should I ever feel nausea at the smell of that classic Hunkie delight, I would lose the will to live.

Today was Mum's turn to take me in for treatment. Mrs P got to sleep in. They have decided to switch off like that. Don't want to burn out the girls in my inner circle. I took care of flushing and cleaning the PEG tube myself, and Mum helped me to coordinate the nine different drugs that start my day. I can't imagine what it would be like to go through this without the two of them. No one should ever have to do this alone.

I was warned about 'roid rage, and I know it's still early, but all I've noticed is that the steroids give me a lot of energy in the morning, then I sort of crash around 3:00 in the afternoon. Today, I took advantage of that in a couple of ways. Mum let me drive to the clinic, which I enjoyed. Then I stayed awake and alert to pay more attention to the machine as it shot me with its mystery rays. The tech explained how enormous lead plates in the gun combine with fine, sliding fingers to shape the beam. By varying the intensity, they can control how deep the particles sink into me. It is amazing to experience, though there is no sensation I can detect. They gave me a brief tour of the "cockpit" where the techs control the whole works from a safe, lead insulated distance. I was amused to see that the whole thing is run by a gang of five Dell computers daisy chained together. Not a Mac in sight. No wonder they crashed so easily yesterday.

Finally, I felt so good when we got home that I decided to take a walk. It was a tiny trip, just once around the short block across from our house, but it felt good to travel familiar sidewalks in the cool morning air. Having a hose running through my abs limits the kind of resistance work I can do, and it queers my posture a bit, but I can certainly walk. I felt no ill effects from the trip, and plan to keep moving as long as I can.

And to top it all off, I was able to eat one of Mrs P's home made bran muffins today with no ill effects.

It's a good day to be alive.

#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.

#168: This is Happening to Us

The days between the PET scan and our next meeting with Dr. Colin were distracted. The nights were filled with unblinking stares at the blackness above our bed. Long fearful silences. "Denial" is as good a word as any.

Kammy was the first to notice at work. She is a young woman at work (nearly everyone is young at work) who pretends to be a silly girl to hide her intuitive compassion.

"You aren't as cheerful as usual today," she observed in that musical Congolese dialect of hers. "What's wrong?"

My candor took me by surprise. "I've been having some tests. The Doctor thinks I might have Cancer." It was the first time I'd said it out loud. Her response was honest and startling.

"I hope you don't. I don't want you to die."

And there it was, out in the air. Together, we had given my silent fear a voice. It was the first of many times I would realize how much I share my condition with the people who know and love me.

The day the Doctor gave us his opinion, Mrs P took it harder than I.

"I can't say for certain that it's Cancer, but if it walks like a duck... There is no time to lose with this. If you delay..."

I finished his thought, bad habit. "It will just keep growing."

The Doc corrected me sternly, "It will take your life." This was not a joke.

He described the surgery and the risks. Nerve Damage. Muscle removed. Loss of taste. Loss of hearing. We thanked him and moved across the hall to schedule the surgery, three days later. The treatment coordinator had strange news for us. My insurance was a strange, bare bones plan. Great for physician visits and prescriptions, but it did not cover inpatient procedures. Blue Cross would not be paying for my surgery.

It was a lot to take in. We rode the elevator down to the lobby and left. In the car, Mrs P started to cry. I was angry about the insurance. She was frightened about the diagnosis.

"I just don't understand why God is letting all this happen to you.."

I would deal with God later. "This isn't happening to me. This is happening to us."

What Kammy had taught me, what I wanted Mrs P to know was that I knew this was a burden we would share. I would not have the luxury of playing the victim. This was going to hurt everyone who cared about me, starting with her. We stopped by work. I picked up a prescription and told my supervisor that I probably had Cancer and would be missing a couple of weeks work after my surgery. I noticed his Livestrong bracelet.

"I may need to get myself one of these." I reached out and touched it, and he smiled sadly. I wondered why he wore one.

Mrs P and I walked out into the sunshine. It was a beautiful April Kentucky afternoon.

I wondered why God was letting this happen to my family.